Nada Hassanein, Author at Missouri Independent

Climate change poses health risks. But it’s hard to fight when state policy ignores it

Nada Hassanein — Thu, 29 Aug 2024 18:43:34 +0000

Mariners Hospital in the Florida Keys was evacuated to prepare for Hurricane Irma in September 2017. Experts say cities and counties are assuming a greater role in the state’s response to climate change’s cascading effects on public health (Marc Serota/Getty Images).

ORLANDO, Fla. — Florida is the hottest state in the contiguous United States, and its residents suffer the most heat-related illness. Older people are most susceptible to the heat, and nearly 4.7 million Floridians — 1 in 5 residents — are older than 65.

The peninsula has 8,436 miles of coastline, and three-quarters of state residents live in coastal counties, imperiled by rising sea levels, extreme rainfall and more intense hurricanes.

Climate change is making Florida hotter and increasing the risk of flooding and severe storms. Increasingly, the state should expect “adverse public health outcomes, such as heat-related illness and mortality, especially among more vulnerable populations,” according to the state climatologist’s office at Florida State University.

But Republican Gov. Ron DeSantis has opposed many efforts to address the causes and public health effects of climate change. As a result, Florida cities, counties and nonprofits have had to assume a greater role in dealing with higher temperatures — without sufficient money and resources to do so, many argue.

Perhaps more than any other state, Florida illustrates how the politicization of climate change has thwarted efforts to deal with it.

Florida, unlike a growing number of other states, does not a have a statewide plan designed specifically to help residents cope with extreme heat and other effects of climate change. Dr. Cheryl Holder, co-chair of Miami-Dade County’s Climate and Heat Health Task Force, said that in the absence of state leadership, Florida cities and counties have done what they can. In 2021, for example, Miami-Dade County named its first-ever chief heat officer, and last month Tampa released a “heat resilience playbook” that includes steps such as enhancing and protecting the city’s tree canopy.

But Holder said a statewide effort — akin to public health campaigns to curb smoking — would have a much greater impact.

“Systematic change is better, but we’re left with a piecemeal approach,” Holder told Stateline.

In Florida and around the country, state public health leadership is essential, said University of Washington professor Kristie Ebi, an epidemiologist and an expert on the health risks of climate change.

“The local health departments follow the lead of the state health department, and it’s difficult to contravene,” Ebi said. “It’s difficult when the state health department says, ‘This is the approach, this is the perspective, these are the parameters,’ for the local health department to do anything differently.”

DeSantis’ office, the Florida Department of Health and the Florida Department of Environmental Protection did not respond to Stateline requests for comment before publication.

A bipartisan concern in the past

As recently as 2008, climate change was a bipartisan concern in Florida. But DeSantis, who unsuccessfully sought the GOP presidential nomination this year, embodies his party’s current dismissive attitude toward climate change — a stance shared by his predecessor in the Florida governor’s office, current U.S. Sen. Rick Scott.

In May, for example, DeSantis signed legislation erasing references to climate change from the state’s energy policy and releasing state agencies from the obligation to consider climate change when executing it. “We’re restoring sanity in our approach to energy and rejecting the agenda of the radical green zealots,” DeSantis wrote on X.

In April, DeSantis signed a law barring Florida cities and counties from passing their own heat protections, such as mandated water breaks, for outdoor workers. As a result, Miami-Dade County had to withdraw its pending rule that would have required water breaks for outdoor workers and training on heat-related illness for employers.

Texas Republican Gov. Greg Abbott last year signed a similar law preempting cities from passing heat-break ordinances.

Meanwhile, many other states are moving in the opposite direction.

States such as Arizona, California, Connecticut, New York, North Carolina and Wisconsin have used federal money from the Centers for Disease Control and Prevention to craft statewide plans to address the effects of climate change on public health. All have Democratic governors.

In April, Democratic-led New Jersey released a draft Extreme Heat Resilience Action Plan that includes providing public cooling centers, planting more trees, and adopting workplace safety rules, among many other steps.

California launched and New Jersey plans to start statewide public information campaigns to raise awareness of the risks of extreme heat, especially among vulnerable populations such as older and homeless people.

Florida State University also received a CDC grant, but the team is focused on working with local health departments, said project lead Chris Uejio, a medical geographer and associate professor at FSU.

“We’re always ready and willing partners if and when the state decides that they’d like some more information along these lines,” Uejio said.

‘Falling behind the pack’

Despite downplaying climate change concerns, DeSantis in 2021 approved $640 million in new state spending to help communities deal with sea level rise, intensified storms and flooding. And in 2019, he appointed the state’s first chief resilience officer.

But DeSantis’ interest in such efforts waned as his presidential campaign ramped up. Florida was one of five states (Iowa, Kentucky, South Dakota and Wyoming were the others) that declined to apply for federal Climate Pollution Reduction Grants under President Joe Biden’s Inflation Reduction Act. The federal government allowed large metro areas to apply for their own climate planning grants. Five Florida areas applied for their own and received dollars for planning, but no grants for implementation.

A year ago, DeSantis rejected nearly $350 million in federal energy efficiency incentives and consumer rebates under the Inflation Reduction Act. But this year, after dropping out of the primary race, DeSantis accepted the money.

Susan Glickman, vice president of policy and partnerships at the CLEO Institute, a Florida-based nonprofit focused on climate education and advocacy, praised the state for addressing sea level rise and for assessing the vulnerabilities of coastal communities. But Glickman said Florida must address the root causes and cascading effects of climate change.

“We must adapt to the warming climate, but the decisions we make right now, not addressing the root cause of the problem, is really unacceptable,” Glickman said. “You cannot adapt your way out of climate change.”

Kim Ross, executive director of ReThink Energy Florida, a Tallahassee-based nonprofit that advocates for clean energy, said the DeSantis administration has been a roadblock.

“This could be a state that’s really focused in on the inventions that need to happen,” Ross said. “Instead, we’re just kind of falling behind the pack.”

Ross said that whenever she sees opportunities for federal climate change grants, her first question is whether it’s possible to get one without state support.

“I’m like, ‘Is there a non-state option?’ And I keep encouraging anybody I can talk to at the federal level to have there be a non-state option,” she said.

As bird flu spreads on dairy farms, an ‘abysmal’ few workers are tested

Nada Hassanein — Tue, 02 Jul 2024 14:12:01 +0000

The USDA has performed more than 17,000 tests for avian influenza on cattle, with a total of 67 herds affected throughout nine states (Getty Images).

Public health officials are concerned about bird flu, which so far has been detected in three dairy farmworkers — two in Michigan and one in Texas — as well as in cattle in a dozen states.

The farmworkers’ symptoms were mild, and researchers have not found that the H5N1 virus, also known as bird flu, can spread from person to person. The federal Centers for Disease Control and Prevention says there is little risk to the general public. However, flu viruses evolve, and H5N1 could mutate and gain the ability to infect people more easily.

“The reason public health authorities are and should be on high alert is because this is a potential high-consequence pathogen,” said Meghan Davis, an epidemiologist and microbiologist at Johns Hopkins University.

That’s why state officials are so focused on testing and surveillance of dairy workers. But they are encountering significant challenges.

H5N1 is deadly to domestic poultry and can wipe out entire flocks in a matter of days, the U.S. Department of Agriculture says. As a result, the poultry industry has responded vigorously to the threat, culling entire flocks when they detect even one infected bird. But H5N1 is milder in cows, and the response on dairy farms has been less aggressive.

The CDC and USDA have advised dairy farms to monitor for the virus in cattle and humans, but testing remains voluntary, except for herds moving across state lines.

In addition, dairy farms are often in remote rural areas, and workers have little access to transportation and no sick leave. As a result, it’s difficult for them to travel to health care providers for testing and treatment. Many dairy workers, who are mostly immigrants, speak Indigenous languages like Nahuatl or K’iche, according to the National Center for Farmworker Health, a nonprofit that offers support and training for centers that focus on the health of farmworkers.

Dr. Amesh Adalja, an infectious disease physician and scholar at the Johns Hopkins Center for Health Security, emphasized that the current bird flu strain isn’t a pandemic threat to humans. That’s why, he said, this is the perfect time to get the right testing and surveillance measures in place.

“If you can’t get it right with something that’s as forgiving as this virus has been, in terms of its inefficiency in infecting humans, it really doesn’t bode well for when the stakes are higher,” Adalja said.

So far, cases of the virus have been documented among domestic livestock in Colorado, Idaho, Iowa, Kansas, Michigan, Minnesota, New Mexico, North Carolina, Ohio, South Dakota, Texas and Wyoming, according to the USDA. Last week, federal officials announced grants to farms to offset the cost of milk loss from sick cows. Four states — Kansas, Nebraska, New Mexico and Texas — are launching voluntary pilot programs to test for the virus in dairy farms’ bulk milk tanks.

In Michigan, where the virus has been detected in 25 herds, Tim Boring, director of the state Department of Agriculture and Rural Development, said efforts are focused on trying to help farmers recoup losses and agree to testing. Last month, the agency announced it would use a combination of federal and state money to give as much as $28,000 to up to 20 affected farms.

The state also launched a study to find out if there are antibodies in people exposed to sick cows, aiming to determine if there have been any asymptomatic infections.

Dr. Natasha Bagdasarian, Michigan’s chief medical executive, said the state is working with community health clinics and local health departments to reach farmworkers.

“They not only know the farms in their counties, but they also know many of the farmworker organizations,” she said.

Dairy farmworkers, who are often immigrants, can’t afford to miss a day of work, and can be reluctant to reach out to request testing or say they feel sick, advocates say.

“This is a population of people that is just vastly underserviced when it comes to both outreach and trust established with state and federal agencies,” said Elizabeth Strater, strategic campaigns director at United Farm Workers, a labor union. “This is a group of workers that are some of the poorest workers in the United States.”

Immigrants make up 51% of daily labor at dairy farms, and farms that employ immigrants produce 79% of the nation’s milk supply, according to the National Milk Producers Federation.

Amy Liebman of the Migrant Clinicians Network, an education and outreach group of experts in migrant health, said testing should be administered on the farms rather than in clinics.

“Dairies are in rural areas, very isolated geographically. You’re not going to get all these workers in one place to be able to do any kind of surveying or testing. It is a matter of really trying to go to where the workers are,” she said.

But it hasn’t been easy getting farm owners to agree to that. The Texas state health department told Stateline it has offered on-site testing to farmers, but as of mid-June, it had tested only about 20 symptomatic dairy workers who volunteered for testing. It also has given personal protective equipment to “interested dairies” and posted a notice online offering to deliver the equipment.

Coordination among state or local agricultural and health departments is key to tracking viral spread. A lack of coordination and monitoring can be contributing to underreporting cases.

“I think it is definitely more widespread than is currently reported,” said Dr. Shira Doron, chief infection control officer at Tufts Medicine. “The barriers between the agencies are really hampering our efforts right now.”

The CDC has offered a $75 payment to any farmworker who agrees to be tested and provide blood and nasal swab samples to the agency. But Doris Garcia-Ruiz, who directs farmworker outreach at Texas Rio Grande Legal Aid, said that won’t make up for days of lost income.

“If they take the time off to go to their doctor’s office, they don’t have sick leave, so they’re not going to get paid,” she said.

The CDC’s latest figures show that at least 53 people have been tested in the cattle outbreak, with a majority of those in Michigan. Strater says that’s not enough.

“That’s abysmal,” she said. “Our method of testing is so passive. They’re relying on workers reporting to medical clinics; these are workers that are not going to be taking themselves for medical treatment unless they’re experiencing something life-threatening.”

Getting workers to use personal protective equipment also is a challenge. The CDC recommends that workers wear respirators, waterproof aprons and coveralls, unvented safety goggles or a face shield, and rubber boots with sealed seams that can be sanitized. It also advises that workers follow a specific sequence of steps to remove the PPE at the end of a shift to avoid contamination.

“Dairy work is very wet, very hands-on,” said Christine Sauvé, who leads community engagement at the Michigan Immigrant Rights Center. “While some industries are very familiar with PPE … the full recommendation from CDC is new and different. And so that really needs the full promotion from the employer, and then also from the state agencies.”

Sauvé worries that Michigan is prioritizing farmers’ losses, rather than farmworkers’ health, in its response. While the risk to the public is low, she and other experts say the population of farmworkers shouldn’t be forgotten.

Bethany Alcauter of the National Center for Farmworker Health described bird flu threat as “kind of a ticking time bomb.”

“Maybe it hasn’t fully gone off yet. But if we don’t manage it well, it could,” Alcauter said.

To close racial gap in maternal health, some states take aim at ‘implicit bias’

Nada Hassanein — Tue, 09 Apr 2024 16:45:27 +0000

Dana Williams, top, and Khalyson McDuffie, doulas with Birth in Color, a Virginia group that offers doula services for pregnant patients of color and training for local maternal health care workers to combat racial bias, participate in a doula simulation training session. Some states are mandating implicit bias training (Courtesy of Kenda Sutton-El/Birth in Color)

Countless times, Kenda Sutton-El, a Virginia doula, has witnessed her Black pregnant clients being dismissed or ignored by clinicians.

One woman was told by doctors that swelling, pain and warmth in her leg was normal, despite warning the clinicians that she had a history of blood clots. Sutton-El urged her to visit the emergency room. Tests found the pregnant patient did indeed have a blood clot, a situation that can be deadly.

Some clients were told they weren’t doing enough to lose weight. After another client was treated dismissively when she paid for a visit in cash, Sutton-El posed as a patient and got the same response, making her wonder how many other Black women had been treated the same way.

“The biggest thing is that they’re not being listened to,” said Sutton-El, founder of Birth in Color, a nonprofit that offers doula services to expecting Virginians. Doulas support and advocate for pregnant patients. “They’re being dismissed or [clinicians] act as if the pain isn’t there, or act as if the issue is normal, when it’s not.”

As the United States contends with stark racial disparities in maternal health, experts are pushing states to mandate training for medical professionals to combat “implicit bias,” the prejudiced attitudes a person might hold without being aware of it. Lawmakers in more states are heeding that call.

Since 2019, at least five states (California, Delaware, Maryland, Minnesota and New Jersey) have enacted laws mandating implicit bias training for maternal health care providers, according to Stateline research and an analysis by researchers at the University of California, San Francisco. Lawmakers in at least 20 other states have introduced legislation related to implicit bias training for general health care professionals.

Virginia lawmakers recently approved similar legislation, sending it to Republican Gov. Glenn Youngkin. He has not said whether he will sign it.

The training can take different forms. Some courses are offered online, while others can be one-day workshops. Participants typically examine certain scenarios and learn about the history and harms of racial stereotypes.

Sutton-El argues that the training can make a huge difference. She said that one white doctor who completed the training recently told her how it had influenced his treatment of a Black patient. She recalled him telling her: “I had your voice in my head that said, ‘Follow the patient down the rabbit hole, because you’ll find out what’s the real issue.’”

But others say implicit bias training can be insufficient or ineffective. Okunsola Amadou, a doula who founded Jamaa Birth Village, a midwifery clinic and maternal health nonprofit in Ferguson, Missouri, said bias trainings alone can’t change a hospital’s culture.

“The ultimate problem with that is that it is barely the surface,” Amadou said. “If they’re not working with [Black maternal health] pioneers who are rooted in this work to help them restructure, then the ‘click-and-go’ implicit bias trainings will not hold any weight at all.”

Tiffany Green, an associate professor at the School of Medicine and Public Health at the University of Wisconsin-Madison, said her team’s review of studies on anti-bias trainings in clinical settings found little evidence that it led to long-term behavioral changes.

Because racism isn’t just an individual problem but a systemic one, Green said, institutions must combat bias at the organizational level. If done incorrectly, it can induce anger in white employees and exacerbate inequities, she said.

While there is evidence that providers’ racial stereotyping affects treatment, it’s not known whether or how bias trainings will impact pregnant patient health outcomes, she told Stateline.

Rachel Hardeman, health equity director at the University of Minnesota Center for Antiracism Research and a co-author of the study on Black and white doctors, developed the widely used “Dignity in Childbirth and Pregnancy” course offered online in states with training mandates, including California and Minnesota. For Minnesota, her team designed a course focused on bias against Indigenous women. She said the courses are designed for both clinicians and hospital management: “People who may not be directly involved in patient care in the day-to-day but are involved in making leadership decisions.”

Evidence of bias

There is ample research suggesting there is racial bias in health care.

Black women in the United States are nearly three times more likely to die of maternal health complications than white women, according to the most recent data from the U.S. Centers for Disease Control and Prevention. Indigenous women are nearly twice as likely to die.

Research has shown implicit racial bias plays a role in those stark disparities. Examples of that bias include false beliefs that Black patients have higher pain tolerance and thicker skin, as well as long-used diagnostic tools — such as lung and kidney function tests — that have prevented proper diagnoses for Black patients.

A CDC study published last year found that nearly 1 in 3 Black, Hispanic and multiracial women reported mistreatment during pregnancy and delivery, such as receiving no response to requests for help, being shouted at, or being threatened with the withholding of treatment.

Another review, also published last year, analyzed 42 studies since 2014 and concluded that racial biases and structural racism contributed to maternal health complications for Black women. And a 2020 study found Black infants were twice as likely to survive when cared for by Black doctors.

Research by Hardeman and others has found that clinicians are more likely to describe Black patients as “not compliant,” “agitated” or “aggressive.” When such descriptions are included in a patient’s medical record, it can color the perceptions of other providers who consult it, influencing their interactions with the patient.

Hardeman’s courses include patient anecdotes that illustrate bias as well as strategies for curbing assumptions and practicing more empathy. The courses also include a history of racism in medicine, such as the gynecological experiments by J. Marion Sims, often called the father of modern gynecology, on Black enslaved people.

Given that history, many Black, Indigenous and Hispanic patients are wary of health care systems.

“We’re talking about the fact that our medical education system has been built within this history of racism, and so we have to be aware of it to undo it,” Hardeman said.

“We wanted to make sure that people walked away understanding that we all have a role in dismantling these systems, and it starts with educating ourselves, and then making sure that what we’re learning and what we’ve been educated on, we’re applying it to the way that we are interacting with different patients and their families.”

Stalled legislation

But passage of a law doesn’t always lead to immediate change.

A year and half after California’s law took effect in 2020, a California Department of Justice investigation found just 17% of providers surveyed had trained their entire staff. Nearly a year after the probe began and more outreach was conducted, completed training rates rose to 81%. New legislation introduced this year aims to strengthen the law by fining health care centers that fail to train their staff, and would extend training requirements to nursing staff.

In many states, implicit bias legislation has stalled before reaching the governor’s desk.

In Missouri, a bill introduced in 2022 died in committee. State Rep. LaKeySha Bosley, a Democrat, reintroduced it this year. And in Georgia, lawmakers reintroduced this session a bill that would mandate implicit bias training for health care professionals in childbirth settings. Both of the reintroduced bills remain in committee.

Dr. Lethenia “Joy” Baker, an obstetrician and gynecologist in rural Georgia, often sees Black patients who specifically sought her out.

“[They] say, ‘I chose you, because you were the one Black woman in town, and I just feel more comfortable,’” she said. “We have to think about the fact that there’s such a lack of diversity in medicine,” making training for everyone important.

“We really need to unpack about the legacy of Southern slaves, and how we begin to move past that. So, I think that legislation is important around this topic, because let’s just face it, that legacy is very painful,” she said.

In South Carolina, Democratic state Rep. JA Moore and other Democrats have introduced implicit bias bills twice since 2020, but neither has passed. Moore said he plans to propose it again.

“I will continue to fight like hell,” Moore told Stateline, saying his aim is to address some of the “challenges so many women have, specifically minority women, low-income women have, in the state of South Carolina.”

South Carolina Black women were more than four times as likely as white women to die of maternal health complications in 2020, according to the state’s latest report. The state’s Morbidity and Mortality Review Committee found that discrimination contributed to more than a third of deaths from 2018 to 2020.

“This is just another way in which we can try to change those numbers,” Moore said. “[It’s] an opportunity to lead a dramatic change in these very horrific, disproportionately racialized health outcomes for so many citizens.”

Few states cover fertility treatment for same-sex couples, but that could be changing

Nada Hassanein — Fri, 29 Mar 2024 13:38:21 +0000

In vitro fertilization process close up (Getty Images).

Elizabeth Bauer was working out at the gym one morning last August when she got a phone call from her fertility nurse. It was a call that Bauer and her wife, Rebecca, had long been waiting for.

Elizabeth dialed in Rebecca so they could listen together: They were pregnant.

The Washington, D.C., couple decided before they got married three years ago that they wanted to have a child. Both wanted to play a biological part in the pregnancy. So, they used a process called reciprocal in vitro fertilization, through which eggs were retrieved from Rebecca and fertilized with donor sperm to create embryos. Then one of the embryos was implanted in Elizabeth’s uterus.

Elizabeth, a 35-year-old elementary school teacher, and Rebecca, a 31-year-old nonprofit consultant, had health insurance, but it wouldn’t cover the roughly $20,000 procedure, so they had to pay out of pocket.

But beginning next year, insurers providing coverage in D.C. will have to pay for IVF for beneficiaries, including same-sex couples, who can’t conceive on their own. Only seven states (Colorado, Delaware, Illinois, Maine, Maryland, New Jersey and New York) have similar mandates. However, a new definition of “infertility” could prompt other states to follow suit.

The American Society for Reproductive Medicine in October expanded the definition of infertility to include all patients who require medical intervention, such as use of donor gametes or embryos, to conceive as a single parent or with a partner. Previously, the organization defined infertility as a condition in which heterosexual couples couldn’t conceive after a year of unprotected intercourse.

The group emphasized the new definition should not “be used to deny or delay treatment to any individual, regardless of relationship status or sexual orientation.”

Dr. Mark Leondires, a reproductive endocrinologist and founder and medical director at Illume Fertility and Gay Parents To Be, said the new definition could make a huge difference.

“It gives us extra ammunition to say, ‘Listen, everybody who meets the definition of infertility, whether it’s an opposite-sex couple or same-sex couple or single person, who wants to have a child should have access to fertility services,’” he said.

At least four states (California, Connecticut, Massachusetts and Rhode Island) are currently weighing broader IVF coverage mandates that would explicitly include same-sex couples, according to RESOLVE: The National Infertility Association. Bills were introduced but failed to advance in Oregon, Washington and Wisconsin.

A recent policy shift at the federal level also might add to the momentum. Earlier this month, the departments of Defense and Veterans Affairs announced expanded IVF service benefits to patients regardless of marital status, sexual orientation or whether they are using donor eggs or sperm. The new policy follows a lawsuit filed in federal court last year.

“The federal government is the largest employer in the country, so if they’re providing these type of benefits, it definitely adds pressure on other employers and states to do the same,” said Betsy Campbell, RESOLVE’s chief engagement officer.

A total of 21 states have laws mandating that private insurers cover fertility treatments, but only 15 include at least one cycle of IVF in that mandate. Only New York and Illinois provide some fertility coverage for people who are insured through Medicaid, the state-federal program for people with low incomes and disabilities. Neither state covers IVF for Medicaid recipients.

100,000 babies

IVF involves collecting mature eggs from ovaries, using donated sperm to fertilize them in a lab, and then placing one or more of the fertilized eggs, or embryos, in a uterus. One full cycle of IVF can take up to six weeks and can cost between $20,000 and $30,000. Many patients need multiple cycles before getting pregnant.

Nearly 100,000 babies in the U.S. were born in 2021 through IVF and other forms of assisted reproductive technology, such as intrauterine insemination, according to federal data.

IVF continues to garner nationwide attention in the wake of the Alabama Supreme Court’s ruling last month that under state law, frozen IVF embryos are children, meaning patients or IVF facilities can be criminally charged for destroying them. The decision caused an uproar, and three weeks later Alabama Republican Gov. Kay Ivey signed a bill into law that provides criminal and civil immunity for IVF clinicians and patients.

Polly Crozier, director of family advocacy at GLBTQ Legal Advocates & Defenders, or GLAD, described the Alabama decision as “a shock to the system.” But Crozier said the reaction to it sparked a “bipartisan realization that family-building health care is important to so many people.”

Crozier praised the insurance mandates in Colorado, Illinois, Maine and Washington, D.C., for more explicitly including LGBTQ+ people. Maine’s law, for example, states that a fertility patient includes an “individual unable to conceive as an individual or with a partner because the individual or couple does not have the necessary gametes for conception,” and says that health insurers can’t “impose any limitations on coverage for any fertility services based on an enrollee’s use of donor gametes, donor embryos or surrogacy.”

Christine Guarda, financial services representative at the Center for Advanced Reproductive Services at the University of Connecticut School of Medicine, said more same-sex couples are seeking help starting families. One reason, she said, is that more large employers that provide insurance directly to their employees, such as Amazon, are including broad IVF coverage.

‘Elective procedure’?

But some lawmakers are skeptical of expanding the definition of infertility to include same-sex couples. That was evident at a hearing on the Connecticut bill earlier this month, where Republican state Rep. Cara Pavalock-D’Amato noted that “infertility isn’t necessarily elective, but having a baby is.”

“Now, we are changing definitions to cover elective procedures,” Pavalock-D’Amato said. “If we’re changing the definition for this elective procedure, then why not others as well?”

She added: “Infertility, whether you are straight or gay, up to this point has been a requirement. Now, is it through this bill that we are no longer requiring people to be sick? They no longer have to be infertile?”

But proponents of the change argue that extending IVF mandates to cover same-sex couples is a question of fairness.

“I don’t think anybody in the LGBTQ community is asking for more. They’re just asking for the same benefit, and it is discriminatory to say, ‘You don’t get the same benefit as your colleague simply because you have a same-sex partner,’” Leondires said in an interview.

“If you’re paying to the same health care system as the person sitting next to you, then you should have the same benefit,” he said.

Elizabeth and Rebecca Bauer, who are busy decorating a nursery and buying baby clothes, recognize that they were fortunate to have the money to pursue IVF even without insurance coverage, and that “there are plenty of people who don’t have the time or the ability.”

“There are so many ways that people who want to build a family might struggle,” Elizabeth said, adding that the previous infertility definition felt like a “pretty impossible barrier” for non-straight couples. “Insurance should make building a family possible for any person or persons who want to.”

New way for states to cover pricey gene therapies will start with sickle cell disease

Nada Hassanein — Mon, 18 Mar 2024 20:06:02 +0000

Hajar Tyler, 14, gets a routine blood transfusion at Children’s Healthcare of Atlanta in March. Hajar has sickle cell disease, a rare hereditary blood disorder for which the FDA recently approved two gene therapy treatments. The Centers for Medicare & Medicaid Services has launched a pilot program to help state Medicaid agencies pay for these expensive treatments (Courtesy of Mapillar Dahn, My Three Sicklers Foundation).

The U.S. Food and Drug Administration late last year approved two breakthrough gene therapies for sickle cell disease patients. Now a new federal program seeks to make these life-changing treatments available to patients with low incomes — and it could be a model to help states pay for other expensive therapies.

The new sickle cell treatments have brought hope to those with the debilitating blood disorder, which is hereditary and disproportionately affects Black people. But the therapies come with a price tag of as much as $3 million for a course of treatment, which can take up to a year. Despite those high upfront costs, cell and gene therapies have the potential to reduce health care spending over time by addressing the underlying cause of the disease.

Under the so-called Cell and Gene Therapy Access Model, the federal government will negotiate discounts with sickle cell drug manufacturers Vertex Pharmaceuticals, CRISPR Therapeutics and Bluebird Bio on behalf of state Medicaid agencies, which provide health care coverage to low-income patients. To participate, state Medicaid agencies must agree to prices based on those negotiations, and pledge to provide broad access to the therapies.

The federal government said it will negotiate an “outcomes-based agreement” with the companies, meaning the prices for treatments will be tied to whether the therapy improves health outcomes.

If there are no in-state treatment centers, Medicaid agencies would pay for patients to receive the therapies in another state. Between 50% and 60% of sickle cell patients are on Medicaid, according to federal estimates.

The federal Centers for Medicare & Medicaid Services (CMS) launched the program, which is scheduled to begin next year, in response to President Joe Biden’s 2022 executive order on lowering prescription drug prices.

CMS officials say the framework is being tested with sickle cell disease treatments first, but that other conditions may be added over time.

Several public health organizations, including the American Society of Gene and Cell Therapy and the Alliance for Regenerative Medicine, say the new program could be a model for helping patients with lower incomes afford other gene therapies.

Gene therapies, a rapidly emerging type of treatment, aim to correct genes responsible for rare hereditary diseases. So far, the FDA has approved treatments for a rare inherited eye condition and certain types of cancer, but more therapies are in the pipeline.

Dr. Lakshmanan Krishnamurti, chief of pediatric hematology and oncology at Smilow Cancer Hospital at Yale New Haven Hospital, called the model “path-breaking.”

“This is an initiative the government has taken to responsibly shepherd resources, but at the same time, maintaining access. From a racial equity, health equity perspective, it’s really important that we make this work,” said Krishnamurti, whose sickle cell patients have participated in clinical trials testing gene therapies.

Some states, such as Michigan, are opting to form their own agreements with Bluebird Bio. The company said it’s in talks with Medicaid agencies in 15 other states and is reviewing the CMS framework. Bluebird spokesperson Jess Rowlands said the company looks “forward to working with the agency on an outcomes-based approach that enables access.”

In a statement released this week, Tom Klima, the company’s chief commercial and operating officer, said, “Our commercial approach is built on the principle that people with sickle cell disease insured through Medicaid deserve the same timely access to gene therapy as patients with other forms of insurance.”

In an earnings call last month, Vertex’s chief operating officer Stuart Arbuckle called the new model an “important additional path to access.”

Who is affected?

The majority of sickle cell patients in the U.S. are Black, but people of Hispanic, Middle Eastern and South Asian descent are also disproportionately affected. There are several types of sickle cell disease, but all of them affect hemoglobin, the protein inside red blood cells that carries oxygen. All types of the disease cause the body’s red blood cells to be deformed.

The disease affects an estimated 100,000 Americans. It can cause strokes, severe anemia and episodes of extreme pain, leading to repeated hospitalizations. Those with sickle cell disease have a life span more than two decades shorter than the U.S. average.

The two gene therapy treatments for sickle cell disease recently approved by the FDA, called Casgevy and Lyfgenia, cost $2.2 million and $3.1 million per patient, respectively. The therapies require several other procedures — including chemotherapy prior to the treatments, which involve removing blood cells from a patient and modifying the DNA before re-introducing them in the body.

In Atlanta, Mapillar Dahn’s three daughters have sickle cell disease.

Her oldest daughter, Amatullaah Tyler, who is 20, was hospitalized earlier this month for another pain crisis. At the end of last year, she underwent a hip replacement due to avascular necrosis, which is the death of bone tissue due to lack of blood supply and a complication of the disease.

Sickle cell disease is a leading cause of stroke in children. Dahn’s 18-year-old daughter had her first stroke in second grade, causing neurocognitive and academic issues. She’s had more than 10 surgeries, including a brain surgery. Like her older sister, Dahn’s 14-year-old also suffered learning challenges after a series of ministrokes and is slated for the same brain surgery later this month. Both rely on monthly blood transfusions to prevent future strokes.

Dahn, who founded the nonprofit patient advocacy group MTS Sickle Cell Foundation, also known as “My Three Sicklers,” said she wants Georgia to participate in the model.

Her oldest daughter isn’t currently eligible for the therapy because she is high risk. But Dahn is optimistic for her two younger daughters.

“The hope of it was overshadowed by the access to it,” Dahn said about the new gene therapy treatments. “The bulk of our patient community relies on [Medicaid] for payment. So, I think this is wonderful that they’re testing out this model to not only make it possible for patients to access, but in the long run to somehow make it more affordable.”

Tabatha McGee, executive director of the Sickle Cell Foundation of Georgia, was part of a group that advised federal officials developing the program.

“We’re very excited because it is a step in the right direction,” she said. “This is something we absolutely want to come to fruition. … We’ve never had a singular focus on sickle cell disease to help improve the inefficiencies, to help improve the inequality, inside of the health care system.”

In a statement, the Georgia Department of Community Health told Stateline it is reviewing the framework.

Expanding access

Dr. Lewis Hsu, chief medical officer of the Sickle Cell Disease Association of America, said the gene therapies are an innovative option that don’t come with the same risks as a bone marrow transplant — the only procedure that may be able to “cure” sickle cell disease for some patients — since the treatment uses the body’s own stem cells and doesn’t require a match from another person.

“Having gene therapy available for sickle cell disease is just very exciting,” Hsu said.

Reliable transportation is essential to beginning treatment. In a memo on state obligations, the federal government said states must ensure necessary transportation and travel expenses for both patients and their caregivers.

Hsu, who is also a professor of pediatrics and director of the Pediatric Sickle Cell Center at the University of Illinois Chicago, said transportation and lodging costs are important to consider, as patients come from all over the state or cross state lines to get treatment.

Federal officials told Stateline that multiple states have expressed interest in participating but wouldn’t say which ones.

Illinois’ Medicaid agency told Stateline it intends to participate.

“People with sickle cell disease often confront barriers to accessing treatments that can improve their health outcomes, including the high costs and geographic challenges,” said spokesperson Jamie Munks. “Expanding access to these high-cost treatments can significantly improve the quality of life for people across Illinois who need them, and will contribute to a more equitable health care system overall.”

In Georgia, Democratic state Rep. Gloria Frazier told Stateline she is pushing her state Medicaid agency to enroll. But Frazier noted that because Georgia has not expanded Medicaid under the Affordable Care Act, many patients would miss out.

“I am urging them to definitely participate in the process,” she said. “If we want to really help cure this disease, it has to be affordable.”

States consider menthol cigarette bans as feds delay action

Nada Hassanein — Fri, 08 Mar 2024 11:50:51 +0000

Kirsten John Foy, founder of The Arc of Justice, a community organization, speaks at a “menthol funeral” demonstration in Washington, D.C., on Jan. 18, 2024. The event, organized by the African American Tobacco Control Leadership Council, aimed to raise awareness of menthol’s disproportionate harmful effects on Black communities as a federal ban is delayed (Courtesy of Josh Brown/African American Tobacco Control Leadership Council)

CLERMONT, Fla. — It was just after sunset, and the evening traffic was buzzing on Highway 50 as 24-year-old Elijah Kinlaw popped into his local Walgreens in Clermont, Florida, to pick up some smokes. He had just finished a long day working at a local roofing company, and he was still wearing his neon green work T-shirt and a red beanie.

After his shifts, Kinlaw typically smokes to wind down. His cigarette of choice: a cooling, minty Newport.

Kinlaw, who started smoking at 19, wants to just “breathe and take one day at a time” instead of relying on cigarettes, but quitting isn’t easy. He’s tried twice and plans to try again.

“Eventually, it catches up to you,” said Kinlaw, one of the disproportionate number of Black smokers who prefer menthol cigarettes. “It’s not good for you. It’s not a high. It doesn’t feel good.”

Menthol cigarettes can be more addictive than regular cigarettes because the menthol masks the harsh burn, making the smoke easier to inhale. Black people smoke at similar rates to white people overall, but most Black smokers — more than 80% — smoke menthol cigarettes, and they are more likely to die of smoking-related disease, according to the federal Centers for Disease Control and Prevention.

For years, public health experts have advocated for higher sales taxes on menthol cigarettes or even an outright ban. In 2021, the federal Food and Drug Administration announced a proposal to prohibit the sale of menthol cigarettes, a move that could prevent up to 650,000 deaths nationwide over several decades, according to research cited by the agency.

But following heavy lobbying — and perhaps fearing the loss of Black votes in an election year — President Joe Biden in December delayed the final decision on a ban. The administration hopes to announce a decision next month.

The delay has drawn fierce criticism from public health organizations. Meanwhile, some states are acting on their own.

Small-shop owners fear bans will hurt their businesses, and some Black leaders say they worry about more policing in their communities.

Massachusetts in 2020 became the first state to ban the sale of all flavored tobacco products, including menthol cigarettes. California enacted a similar ban in 2022. This year, bills that would empower state officials to ban the sale of menthol along with all other flavored tobacco products have been introduced in at least four states (Hawaii, New York, Vermont and Washington). Last year, bills were introduced in at least 10 states.

In addition, more than 190 cities and counties across at least eight states have restricted the sale of menthol cigarettes, according to the Campaign for Tobacco-Free Kids.

Other minority groups also disproportionately smoke menthols: In 2020, 51% of Hispanic adult smokers reported using menthol cigarettes, compared with 35% of non-Hispanic white adult smokers, according to the CDC. Research has shown that female smokers and those who are Asian, Native Hawaiian, Alaska Native, LGBT, or who have mental health conditions also are more likely to smoke menthols.

Kinlaw said he’s in favor of a ban. “We’ve got to take precaution,” he said.

Industry influence

But the tobacco industry has long marketed menthol cigarettes to Black communities. The marketing of Kool and Newport brand menthol cigarettes to Black people began gaining ground in the 1950s, and included focused advertising and corporate sponsorships of events popular in Black communities, such as jazz concerts. One 2013 study of Black middle- and high-school students in California found they were three times more likely than non-Black students to recognize cigarette ads featuring Newport as opposed to Marlboro.

To shed light on that fact and to call for change, dozens of people last month took part in a funeral march in Washington, D.C., held by the African American Tobacco Control Leadership Council. Rather than marking a single death, the marchers — led by trumpet players and people carrying a casket reminiscent of a cigarette pack — were demanding the demise of menthol cigarettes.

Phillip Gardiner, a behavioral scientist and expert on racial health disparities who co-chairs the council, said multiple presidential administrations “have dragged their feet” on the issue.

“Instead of burying African Americans, let’s bury menthol,” said Gardiner, whose own father died from smoking-related disease at 65.

In nearby Maryland, state law prohibits the sale of flavored e-cigarettes but there is an exemption for menthol-flavored products. Only one other state, Utah, has a similar law. A Maryland bill that would have banned the sale of all flavored tobacco products failed last year.

Maryland Democratic state Sen. Joanne Claybon Benson represents the Washington suburb of Prince George’s County, which is majority Black. Her husband died from lung cancer complications when he was only 59.

“I can personally tell you the story of how harmful menthol cigarettes can be to an individual, an individual of color,” said Benson, her voice tinged with frustration. Benson doesn’t smoke, but she was exposed to secondhand smoke from her husband and is a cancer survivor. “We don’t want smoking, period, of any kind in our community.”

An analysis published last week in the Oxford University Press journal Nicotine & Tobacco Research found that bans on the sale of menthol cigarettes can help smokers quit entirely. Researchers examined local bans in the United States, Canada and the European Union, and found that a quarter of menthol smokers quit smoking after a ban was enacted.

Sarah Mills, an assistant public health professor at the University of North Carolina at Chapel Hill and a lead author of the study, said policymakers considering bans should be aware of the tobacco industry’s “long history of providing funding to different groups and of using front groups” to oppose them.

Princeton University professor Keith Wailoo, a medical historian and author of the book “Pushing Cool: Big Tobacco, Racial Marketing, and the Untold Story of the Menthol Cigarette,” said tobacco’s disproportionate harm to Black people cannot be disentangled from the money Big Tobacco has spent in Black communities.

“If you want to understand how menthol both started and built a foothold, you have to understand the way in which the industry developed tentacles from the street corner level, by identifying influencers and then funding politicians who would defend their rights to advertise, to supporting civil rights organizations,” Wailoo said in an interview.

“The history of menthol cigarettes is part of the history of the slow strangulation of Black people.”

Pushback on bans

But some opponents of bans wonder why legislators are singling out menthol cigarettes and other flavored tobacco products while allowing the sale of other dangerous items. Beatriz Rodriguez, who owns the Dat Hoot Smoke Shop in Apopka, Florida, said the proposed federal ban would harm her business.

“As a small-business owner, obviously that would hurt me,” Rodriguez said. “It would upset me because there’s so many other things that are way more dangerous. Tobacco kills — but it’s like, OK, alcohol kills, prescription pills kill.”

Other critics argue a menthol ban would lead to over-policing of Black communities. In New York, for example, Black, Puerto Rican, Hispanic and Asian Legislative Caucus Chair Michaelle Solages, a Democratic assemblymember, has been an outspoken opponent.

“We are very cautious about enforcement on the average New Yorker,” Solages said in an interview, adding she worries about “over-enforcement in marginalized, underserved communities of color.”

But the FDA has made it clear that any ban would target the retail sale of menthol cigarettes and not the people who use them. “Importantly, the FDA cannot and will not enforce against individual consumers for possession or use of menthol cigarettes or flavored cigars,” a news release on the proposed rule states.

Gardiner and Wailoo said people who warn of increased policing are echoing arguments that the tobacco industry has made. He said the industry often tries to “tap into anxieties and concerns” about police violence or aggressive policing that already exist.

Meanwhile, other public health experts say increasing taxes on menthol cigarettes — a strategy that has been used to reduce overall smoking — won’t pack nearly the same punch as a ban.

“You’re taxing people who have been targeted by companies,” said Ruqaiijah Yearby, a health law professor at the Moritz College of Law at Ohio State University. “You’re not actually getting at the people who have caused the harm — which are the cigarette companies.”

Yearby also criticized state laws that tie the hands of local officials who want to crack down on tobacco use. Republican lawmakers in Ohio recently blocked cities and counties from passing their own tobacco control ordinances. The American Lung Association says that 39 states have such laws.

Florida, where Kinlaw is trying to quit smoking and Rodriguez worries about her smoke shop, is one of them.

Tuberculosis cases rise, but public health agencies say they lack the resources to keep up

Nada Hassanein — Fri, 09 Feb 2024 13:15:53 +0000

A digitally colorized scan of Mycobacterium tuberculosis bacteria, which cause tuberculosis in human beings. Although tuberculosis cases have been rising, public health departments say they lack the resources to stop the disease from spreading (Courtesy of the National Institute of Allergy and Infectious Diseases).

Until COVID-19, tuberculosis was the world’s deadliest infectious disease, killing about 1.5 million people annually.

Contrary to public perception, the disease is still active in the United States. The number of TB cases in the U.S. briefly dropped at the start of the pandemic, but there was a 5% increase in cases in 2022, according to the latest numbers from the federal Centers for Disease Control and Prevention, from 7,874 in 2021 to 8,300 in 2022.

Nationally, those numbers are still lower than they were before the pandemic, but some states — including Alaska, Nevada, South Carolina and Washington — have exceeded their pre-pandemic figures, according to a CDC report citing state data.

Even as the number of U.S. tuberculosis cases rises, public health experts say, awareness is lagging. And state and local health departments lack the resources to keep up with prevention and control efforts.

The disease spreads through the air when a person with an active infection coughs or sneezes. A bacterial infection, it usually attacks the lungs, but also can affect other parts of the body, including the kidneys, spine and brain. It’s usually treated via a four- to nine-month regimen of multiple antibiotics. A course of treatment for one tuberculosis case can cost around $20,000 in the U.S., and a drug-resistant tuberculosis case can cost at least $182,000.

While anyone can catch tuberculosis, it disproportionately afflicts foreign-born people and Hispanic, Black, Asian American, Pacific Islander and Indigenous communities, according to the CDC. In total, the agency reports that about 88% of U.S. cases in 2021 were among racial and ethnic minority groups. That’s a product of structural barriers to health care and more crowded living conditions, experts say.

Black, Hispanic and Indigenous people also are more likely to be incarcerated, homeless or have HIV — all risk factors for the disease.

“People think tuberculosis is gone. … It’s here and growing,” said emergency medicine physician Dr. Georges Benjamin, executive director of the American Public Health Association, which represents public health professionals.

Benjamin said a lack of resources complicates state, local and federal efforts to control the spread.

For each patient with tuberculosis, contact tracers must spend time tracking down 10 to 15 people who might have been exposed, according to Donna Hope Wegener, executive director of the National Tuberculosis Coalition of America, which represents tuberculosis program managers in states, cities and territories.

Since 1994, funding for the CDC’s Division of Tuberculosis Elimination has declined by about 60% when adjusted for inflation, according to a division analysis provided to Wegener.

An analysis by the Association of State and Territorial Health Officials noted that public health spending rose significantly in 2020 and 2021 in response to the COVID-19 pandemic, but the analysis also pointed to a sharp increase in vacancies in public health departments since 2016 and warned of a post-pandemic drop-off in funding.

A recent report by Trust for America’s Health, a nonprofit research and advocacy group, concluded that “many long-standing deficiencies remain unaddressed as state and local health departments could not use pandemic response funding to address other public health programming and infrastructure needs.”

“[Tuberculosis] programs are expected to do more with decreasing funding,” Wegener said. “I have heard several programs say to me that we are basically in a crisis mode right now.”

State and local efforts

In Alaska, which has the highest TB rate, the number of cases per 100,000 residents surged from 7.9 in 2021 to 13.0 in 2022. Hawaii has the second-highest rate, but its rate decreased slightly during the same period, from 7.4 to 7.0. California’s rate increased from 4.5 to 4.7, while the rate in both Texas and New York increased from 3.4 to 3.7 and 3.6, respectively, according to the CDC data.

In Texas, local health departments conduct their own investigations and follow-up, a spokesperson said.

Tommy Camden, tuberculosis prevention and control program manager of the San Antonio Metropolitan Health District, said the department runs a clinic and has partnerships with the local hospital and Texas Biomedical Research Institute. San Antonio is one of a handful of U.S. sites that received a 10-year research funding grant from the CDC.

But funding for prevention, treatment and control — including for public health staffing — falls short for San Antonio, Camden said. The city helped fund six more positions at the department to make up for the lack of state and federal dollars, he noted.

“It’s a huge challenge. … The state and federal grants have been capped,” he said. “As the needs and the necessities have increased, and the challenges have increased, the funding has remained pretty level and it’s put a strain on all the TB programs.”

In Alaska, advocates and medical professionals have been pushing for more state funding for TB control. Brian Lefferts, environmental health and engineering director of the Yukon-Kuskokwim Health Corporation, which represents 58 tribes, said the state contributed about $960,000 through a tuberculosis and congenital syphilis prevention grant.

“We still have a really large TB problem and so while that’s great, there’s always more that we could be doing,” Lefferts said.

In New York City alone, more than 530 TB cases were identified in 2022, according to the state health department.

When an outbreak occurs, the state health department coordinates with local health departments for contact tracing, screening and testing, Erin Clary, New York state health department public information officer, told Stateline. People who test positive for a TB infection are offered treatment, she said.

California health officials said they provide patient education materials in multiple languages and work with about 30 community-based organizations on outbreak prevention and coordinate with local health departments on responses when outbreaks occur.

Alaska’s community testing efforts focus on areas with the highest rates, including Alaska Native communities in the southwestern and northern regions of the state. In 2022, the state saw 95 cases, a 64% increase from the previous year, health department reports show.

Monitoring, screening to catch cases

There is a vaccine for tuberculosis, but it isn’t recommended for use in the U.S. because it can potentially interfere with tuberculosis tests via skin samples and has questionable effectiveness against pulmonary tuberculosis in adults. Research is underway for developing a new vaccine.

The disease can be difficult to treat due to antibiotic resistance — hence the multidrug regimen.

“Treatment gets very serious, because we have a lot of drug-resistant tuberculosis now,” said Dr. Allison Kelliher, a family medicine physician and researcher at the Johns Hopkins School of Nursing and the Bloomberg School of Public Health Center for Indigenous Health.

A person can have what’s called latent tuberculosis, an infection that isn’t contagious and doesn’t show symptoms, but can become active and contagious if the immune system fails to contain it.

“[TB] can be insidious. It can look different ways,” Kelliher said. She noted that along with pulmonary TB, there are other types that affect the bones or kidneys. “TB can be a great pretender.”

Kelliher, who is Koyukon Athabascan and from Nome, Alaska, knows the disease well: Her birth grandmother died from it, and her other grandmother, who adopted her mom, had a lung resection because of the disease, she said.

“The effects of TB are multigenerational and cannot be overstated as far as the disease and the way that it has devastated our populations in the past,” she said. “We tend to live in closer quarters.”

U.S. territories, including the Marshall Islands, the Northern Mariana Islands and Guam also see high rates: In 2021, each had 280.6, 67.8 and 34.4 cases per 100,000 people, respectively.

Chibo Ahrum Shinagawa, senior program manager of infectious diseases at the San Francisco-based Association of Asian Pacific Community Health Organizations, works on outreach and access to care in Pacific Islander communities on the mainland. She also manages the national TB Elimination Alliance.

Her group works with the CDC and community organizations on education efforts designed to “break down the stigma of TB and connect those most vulnerable, those with the most language barriers, those that need that culturally relevant and culturally linguistic care, back to the public health departments,” said Shinagawa.

An estimated 13 million people in the U.S. are living with latent tuberculosis, the CDC says, and many of them don’t know they have the disease. Experts say awareness around risk factors is imperative, so that people can get tested and prevent spread in case it becomes active.

As Congress considers cutting the CDC’s budget, Benjamin said he hopes to see resources preserved and allocated to the agency for tuberculosis control so it can better support states’ efforts.

“There really needs to be a statewide effort to address this,” said Benjamin. “There needs to be a greater emphasis on tuberculosis. Not that the CDC is not trying; they need the resources to do it.”

More states offer health care coverage for certain immigrants, noncitizens

Nada Hassanein — Wed, 31 Jan 2024 15:19:11 +0000

Julio Figuera, 43, an asylum-seeker, talks about his life traveling to the U.S. from Venezuela and living at O’Hare International Airport while he waits for medical treatment at the Cook County, Ill., medical clinic in October 2023, in Chicago. Across the U.S., states are implementing more programs to offer health care coverage to immigrants who don’t otherwise qualify for it because of their immigration status (Charles Rex Arbogast/The Associated Press).

Gabriel Henao fled Colombia to escape a guerrilla group who, he said, twice threatened to kill him. After some time in Mexico, he arrived in Colorado in July 2022, settling in Fort Collins.

His severe stomach pain started when he was in Mexico, he said. It was debilitating and left him bedridden for days at a time. The pain continued to plague Henao in the United States, but he said he didn’t make enough money cleaning houses to pay for health insurance.

Colorado did not offer Medicaid coverage to residents living in the country without legal status such as Henao, or to immigrants in the mandatory five-year waiting period after receiving their green cards. Without coverage, Henao couldn’t get a proper checkup, he said, let alone a diagnosis or treatment for his stomach pain.

That changed at the beginning of this month, when Henao received care through Colorado’s OmniSalud program, which provides health care coverage to low-income immigrants in the country without documentation. When the program started accepting enrollments in 2022 it covered 10,000 people without requiring them to pay premiums, and this year Colorado expanded the number of zero-premium slots to 11,000.

Alianza NORCO, a nonprofit organization that supports immigrants in northern Colorado with legal and other resources, is helping Henao acclimate to the U.S. and assisted with his application to the OmniSalud program.

“I started to get really scared, nervous, anxious because I didn’t have money to care for my health,” said Henao, 44, a father of three who owned a clothing warehouse in Colombia. He has applied for asylum, saying his life was in danger in his native country.

Now, after undergoing an appendectomy three weeks ago, “I feel excellent,” he said in Spanish through a translator provided by the Colorado Immigrant Rights Coalition.

Colorado is one of a growing number of Democratic-dominated states that are extending health care coverage to a limited number of immigrants who otherwise wouldn’t be eligible for public insurance because of their legal status.

Supporters say such programs save money in the long run, because insured people are more likely to receive treatment for chronic conditions and get preventive care, thereby avoiding expensive medical crises that end up costing taxpayers and raising premiums for the insured. But as more states face budget crunches, critics object to spending millions to insure people who are living here without authorization.

Meanwhile, the flood of migrants at the U.S.-Mexico border figures to be a major issue in the presidential campaign. And earlier this week, nine Democratic governors sent a letter to the Biden administration and congressional leaders urging them to solve the “humanitarian crisis” of “the sustained arrival of individuals seeking asylum and requiring shelter and assistance.”

The Colorado program serves immigrants, regardless of their legal status, who have an income of less than $22,000 a year for an individual or less than $45,000 for a family of four. The state filled its 11,000 available slots in two days. The program costs the state an estimated $73 million annually, according to the Colorado Division of Insurance.

“For some people, it’s the first time that anyone in their family has been able to have health care, which is a huge, life-changing advancement,” said Raquel Lane-Arellano, communications manager for the Colorado Immigrant Rights Coalition. “They’re not just seeking emergency care. They’re able to go get preventative care.”

Covering more people

Advocates say the pandemic, and the health disparities it revealed, prompted state efforts to provide coverage to more people, regardless of their immigration status.

“It’s a very exciting trend that we are monitoring very closely. Some of the work on this has been decades long,” said Tanya Broder, senior staff attorney at the National Immigration Law Center. “But the recognition of the value of investing in health care for all really increased during the height of the pandemic, when states recognized that our health is interconnected, and it makes sense to protect the health of everyone in the community in order to protect public health.”

California, Oregon and Washington state also offer health care coverage to people of all ages who have incomes below a certain level, regardless of their immigration status. Minnesota will do so starting in 2025.

In addition, at least 24 states and Washington, D.C., now offer coverage to pregnant immigrant women who are in the five-year waiting period to qualify for Medicaid, according to an analysis by KFF, a health care policy research organization. Meanwhile, seven states — California, Illinois, Maryland, Massachusetts, Minnesota, Rhode Island and Washington — use state dollars or money from the state-federal Children’s Health Insurance Program, known as CHIP, to offer coverage for a year postpartum regardless of immigration status, according to KFF.

Starting in March, Michigan will eliminate the five-year waiting period for Medicaid for children and pregnant women. The change will result in coverage for up to 4,000 children and about 5,500 women, most of them Hispanic, said Simon Marshall-Shah, senior policy analyst for the Michigan League for Public Policy. Michigan will spend about $6.4 million on the program, but federal matching funds will bring the total to $26.4 million.

And this month, a new law went into effect in California offering Medicaid coverage to adults ages 26 to 49 regardless of immigration status.

California rolled out its health care coverage for immigrants in phases. In 2020, the state expanded its Medicaid program, which it calls Medi-Cal, to young adult immigrants ages 19 to 25, modeling the Young Adult Expansion program after a previous one for children under 19.

“This expansion comes out of our state general fund, meaning there isn’t like a new tax or a new funding source that we have to raise for this expansion,” said Sarah Dar, California Immigrant Policy Center’s policy director. Since emergency room visits are costly to both individuals and hospital systems, creating programs that expand access to primary health care coverage “makes good fiscal sense,” she said.

Pushback on efforts

But critics say California can’t afford the expansion amid the state’s mounting budget deficit. Republican state Sen. Brian Jones, who is the minority leader, released a statement earlier this month urging Democratic Gov. Gavin Newsom to enact an 18-month freeze on the program.

“In the midst of a significant budget deficit, hospitals shutting down, and a massive influx of migrants illegally crossing our open border, now is not the time to be expanding this costly government program,” Jones wrote. “Our priority should be safeguarding critical services and core functionalities.”

In Nevada, Republicans blocked efforts to expand Medicaid to immigrants without documentation last year, saying the proposal would be too costly. During a March floor debate, Republican state Sen. Robin Titus, who is also a physician, said she worried about adding thousands more to the Medicaid rolls when the state already struggles with a lack of enough health practitioners.

“You’re diluting an even more diluted system. So, in the long run, it might hurt everyone,” she said. “How do you solve that access to care when you already don’t have enough of us?”

However, Republican-dominated Utah this month began enrolling kids in a new state-funded children’s health insurance program that covers immigrant children without documentation. The bipartisan bill signed by Utah Republican Gov. Spencer Cox last March allocated $4.5 million toward the program.

Critics say immigrants who are living in the United States illegally burden the system without contributing to it. But even unauthorized workers have payroll taxes deducted from their paychecks, and they pay sales taxes on their purchases. Immigrants without legal status pay property taxes on their homes or indirectly as renters, and at least half file income tax returns.

Those taxes help support public insurance programs such as Medicaid and Medicare, research shows. An analysis published in 2022 in the American Medical Association’s JAMA Network Open by researchers from Boston University, Harvard Medical School and others found immigrants here without legal permission pay an estimated $51.9 billion more into the health care system than the cost of their care.

Ultimately, “it’s about values,” said Dar, of the California Immigrant Policy Center. “We want our communities to be healthy. … It costs much less to just get preventative care, get regular checkups, get on insulin; if you need it, get on a statin, if you’ve got blood pressure issues. Those things are actually far, far cheaper than expensive life-saving procedures and tests.”

Starting this month in Washington state, immigrants without documentation and recipients of Deferred Action for Childhood Arrivals, which delays deportation of immigrants who came to the U.S. as children, are allowed to shop for health plans through the state’s exchange marketplace. Those making $36,450 or less can qualify for state aid to help them cover premiums.

In July, the state also will launch a new Medicaid program that will cover poorer residents ages 19 and older, though there will a spending cap.

Dr. Leo Sergio Morales, who co-directs the University of Washington’s Latino Center For Health, noted that certain treatments and procedures, such as transplants, are especially costly and increasingly inaccessible for the uninsured.

“Transplants can be life-saving,” Morales said, “[and] people have to be able to afford the medications and treatment that follows the transplant — so, a lifetime of immunosuppression.”

States are also grappling with budget constraints. Illinois, for example, last November paused new enrollments for its health care coverage program for noncitizens 42 and older.

Colorado’s OmniSalud now provides zero-premium coverage to 11,000 people, but the state has about 200,000 immigrants who are in the country without authorization, Colorado Immigrant Rights Coalition’s Lane-Arellano noted. “The biggest thing we want to see is the program continuing to expand,” she said. “This is very much that ‘all ships rise’ kind of situation.”

“There are economic reasons and sound data that prove preventative care saves the state of the economy and families in the long run,” she added. “It hurts families, and it hurts our entire community, our economy, when people get sick or are forced into medical debt.”

Henao hopes more states create programs like OmniSalud.

“It will be positive for all communities if immigrants who are arriving are able to get the support that they need, are able to get the ability to work, have access to health insurance,” he said. “Medical care is costly in this country.”

There’s a new pill for postpartum depression, but many at-risk women face hurdles

Nada Hassanein — Thu, 11 Jan 2024 19:48:53 +0000

Suicide and overdoses are among the leading causes of maternal death in the U.S. (Getty Images).

The first pill for postpartum depression approved by the U.S. Food and Drug Administration is now available, but experts worry that minority and low-income women, who are disproportionately affected by the condition, won’t have easy access to the new medication.

About 1 in 8 women experience symptoms of postpartum depression, federal data shows. Suicide and drug overdoses are among the leading causes of pregnancy-related death, defined as death during pregnancy, labor or within the first year of childbirth. Black, Indigenous, Hispanic and low-income women are more likely to be affected.

Most antidepressants take six to eight weeks to take full effect. The new drug zuranolone, which patients take daily for two weeks, acts much faster. But the medication, manufactured jointly by Biogen and Sage Therapeutics under the brand name Zurzuvae, comes with a hefty price tag of nearly $16,000 for the two-week course.

Postpartum depression can be treated with a combination of therapy and other antidepressants. But Zurzuvae is only the second medication, and the first pill, that the FDA has approved specifically for the condition.

The first approved drug, brexanolone, also made by Sage Therapeutics, under the brand name Zulresso, costs $34,000 before insurance and requires a 60-hour hospital stay for an IV treatment. Doctors typically must get approval from patients’ health plans before prescribing it, and hospitals must be certified to administer it.

Experts and advocates are urging state Medicaid agencies to make sure the low-income patients who are covered under the joint state-federal program have easy access to Zurzuvae. They want Medicaid managed care plans — and private insurers — to waive any prior authorization requirements and other restrictions, such as “fail-first” approaches that require patients to try other drugs first.

Zurzuvae became available by prescription last month. Several state Medicaid agencies contacted by Stateline said they haven’t yet adopted a policy and will handle prescriptions on a case-by-case basis. Others said they automatically add FDA-approved drugs to their preferred drug lists, though some require prior authorization.

Medicaid covers about 41% of births nationwide and more than two-thirds of Black and Indigenous births, according to health policy research organization KFF.

As of last month, only 17 insurers in at least 14 states — less than 1% of the nation’s 1,000 private insurance companies — had published coverage guidelines for Zurzuvae, according to an analysis by the Policy Center for Maternal Mental Health. Five of the 17 companies said they will require patients to try a different medication first. Three will mandate that psychiatrists prescribe Zurzuvae, though OB-GYNs can and do treat perinatal and postpartum depression, per the American College of Obstetricians and Gynecologists.

Experts say restricting prescription privileges to psychiatrists will limit access because many of them don’t accept insurance. While most states now offer Medicaid coverage for a full year postpartum, many psychiatrists don’t accept Medicaid due to low reimbursement rates.

States also are grappling with shortages of psychiatrists and OB-GYNs.

“A lot of people in the early postpartum period are going to still be served by their obstetric provider, and if their obstetric provider is very, very far away, it’s going to be more difficult for them to get diagnosed with postpartum depression and have the recommended follow-up care, whether that’s through an obstetric provider or referral to a mental health care provider,” said Maria Steenland, a researcher on maternal and reproductive health services and health policy at Brown University.

In a statement to Stateline, a spokesperson for the federal Centers for Medicare & Medicaid Services said Sage Therapeutics participates in the federal Medicaid drug rebate program, but that individual state Medicaid agencies will determine their own coverage policies.

Dr. Leena Mittall, a psychiatrist and chief of the Division of Women’s Mental Health at Brigham and Women’s Hospital in Boston, advocates a “no wrong door” approach to the new treatment and mental health coverage overall.

“I’m really hopeful that there will not be excessive restrictions in terms of especially burdensome authorization processes or availability,” she said. “If somebody’s seeking treatment or help, that we have multiple points of entry into care.”

In New Mexico, more than a third of residents are covered by Medicaid, the highest percentage in the nation, according to 2021 figures analyzed by KFF. New Mexico Medicaid said it automatically adds drugs approved by the FDA to its preferred drug list, meaning Zurzuvae is covered.

A spokesperson for the Medicaid agency in Louisiana, which has the nation’s second-highest proportion of Medicaid recipients at 32%, said it also will cover the drug.

In Illinois, where 20% of people are covered by Medicaid, officials told Stateline that for now, they will cover the cost of the medication on a case-by-case basis.

“We will not have them wait for our system to have it listed on that [preferred drug] roster,” said Dr. Arvind Goyal, chief medical officer of the Illinois Department of Healthcare and Family Services. “We will maybe talk to the prescriber and make sure that it’s the appropriate medication.”

The Massachusetts state health department told Stateline it will add Zurzuvae to its preferred drug list in March, but will require prescribers to get prior authorization. The Georgia Department of Community Health said it will consider coverage on a case-by-case basis until May 1, after the issue is discussed at an April drug board meeting.

“We recognize that Black and Brown women are reported to be disproportionally impacted by [postpartum depression]. In addition, those who live in rural areas and those who have Medicaid may be more likely to receive inadequate postpartum care, compared to those who live in urban areas,” Biogen spokesperson Allison Murphy wrote in the statement.

“We are also working with key stakeholders across states to help raise awareness of the importance of treating [postpartum depression] rapidly and helping remove potential barriers to treatment.”

In a 2022 report, the federal Centers for Disease Control and Prevention detailed causes of maternal deaths between 2017 and 2019, finding that pregnant women and newly postpartum mothers were more likely to die from mental health-related issues, including suicides and drug overdoses, than any other cause. In total, mental health conditions were responsible for 23% of more than 1,000 maternal deaths, the CDC study found.

The CDC report also found that about 31% of maternal deaths among Indigenous women were due to mental health conditions. Black women, whose national maternal death rate is three times higher than white women’s, are twice as likely as white moms to suffer from a maternal mental health condition but half as likely to get treatment, according to the Maternal Mental Health Leadership Alliance.

Similarly, a review published in 2021 in The American Journal of Maternal/Child Nursing found a higher prevalence of postpartum depression among American Indian and Alaska Native women.

Previous analyses also have shown disparities in postpartum depression prevalence and its risk factors among Latina women.

Sage Therapeutics and Biogen tapped Kay Matthews, founder of Houston-based Shades of Blue, a national Black maternal mental health advocacy and support group, to help craft culturally sensitive advertising campaigns.

Matthews, who struggled with postpartum depression after giving birth to her stillborn daughter, said she was glad to see financial assistance programs offered but hopes they will continue beyond the rollout. Matthews said more pharmaceutical companies should focus on developing postpartum mental health drugs.

“We know that all drugs don’t work the same for everybody, right? There’s no one-size-fits-all approach,” she said. “The more we uplift these things in a way, then we start to really reach towards equitable care within a system that we know wasn’t designed to care for us, but we have the ability to change that.”

Catherine Monk, a clinical psychologist and director of the Perinatal Pathways Lab at Columbia University Irving Medical Center, said while the medication “isn’t a panacea,” access to it as a treatment option is an opportunity for insurers to improve mental health coverage parity.

“We’re stuck in our unfairness, and I’m deeply concerned about that,” Monk told Stateline. “Please cover it so we don’t have the situation of greater inequities in terms of access to frontline treatments. … [There’s] really strong evidence that these untreated mental health conditions contribute to maternal mortality.”

In Washington state, Uniform Medical, which covers state government employees, requires a diagnosis of severe postpartum depression, though Zurzuvae is approved for use by the FDA regardless of severity, according to the Policy Center for Maternal Mental Health’s report.

University of Washington professor Dr. Ian Bennett, a family medicine physician, specializes in perinatal mental health. Bennett said he hopes that state Medicaid agencies won’t use the introduction of Zurzuvae as an excuse to cut back on other types of mental health care for new mothers. UnitedHealthcare Community Plan under Washington’s Apple Health, the state’s Medicaid program, added Zurzuvae to its preferred drug list but requires prior authorization.

“The issue is not just that we should be covering these medications, but that there needs to be an attention to the increasing costs of these medications and the need to increase overall coverage and funding of the cost for serving these communities,” he said.

In a recent MedPage Today piece, Monk and psychiatrist Dr. Andrew Drysdale criticized the new drug’s high cost, which they fear will limit access to the patients who need it most.

“We’ve already seen this play out with infused brexanolone: Barriers to treatment, such as cost, insurance coverage, availability, and logistical difficulties, have hampered uptake,” she and Drysdale wrote.

Grassroots groups across the country help Medicaid recipients regain lost coverage

Nada Hassanein — Thu, 21 Dec 2023 13:51:08 +0000

On Monday, the U.S. Department of Health and Human Services issued another warning, mailing letters to governors of nine states — Arkansas, Florida, Georgia, Idaho, Montana, New Hampshire, Ohio, South Dakota and Texas — with the highest rates of children dropped from the rolls (Getty Images).

Eight months after states started dropping millions of low-income families from Medicaid rolls, grassroots groups say they are leading the push to re-enroll people denied coverage for bureaucratic reasons.

Nationwide, more than 12.5 million people have lost coverage since April. That’s when the federal pandemic provision that had required states not to drop anyone from the rolls expired and states restarted income eligibility checks.

Federal officials over the summer allowed states to exercise flexibility to avoid potentially unnecessary coverage losses, and mailed letters to governors warning that high numbers of removals for procedural reasons and long wait times could violate federal rules.

Still, as of Dec. 13, 71% of the people who were dropped lost their coverage through “procedural” disenrollments — that is, they were missing paperwork or otherwise didn’t complete the renewal process by a specified date — according to health policy research organization KFF.

Many of those people may be eligible for coverage, but struggle to get the paperwork through state bureaucracies.

Children, young adults, and Black and Hispanic people are overrepresented on the Medicaid rolls, compared with their share of the overall population. A federal Office of Health Policy brief published in August 2022 ahead of the unwinding estimated that nearly one-third of those predicted to lose coverage would be Hispanic and another 15% Black — groups with health disparities that were magnified during the pandemic. About 60% of Medicaid enrollees are Black, Hispanic, Asian or multiracial.

More than 2.4 million children have lost coverage. On Monday, the U.S. Department of Health and Human Services issued another warning, mailing letters to governors of nine states — Arkansas, Florida, Georgia, Idaho, Montana, New Hampshire, Ohio, South Dakota and Texas — with the highest rates of children dropped from the rolls.

Officials urged those states, which together have dropped 60% of the children who have lost Medicaid coverage nationwide, to use flexibility provided by federal officials to “help prevent children and their families from losing coverage due to red tape,” noting the efforts are “especially important for children and families of color.”

The department also noted that the 10 states that have not expanded Medicaid — Alabama, Florida, Georgia, Kansas, Mississippi, South Carolina, Tennessee, Texas, Wisconsin and Wyoming — “have disenrolled more children than those that have expanded combined.”

Federal officials also announced that relaxed rules that allowed automatic renewals will be continued through the end of 2024 to give states more time and keep more families covered.

States have released online tools to help local leaders and providers offer guidance on how to enroll. Texas, for example, created “ambassador” toolkits in Spanish and English, with social media graphics and flyers geared toward families and older residents on how to set up an online account to re-enroll. Utah said it developed billboard and radio ads along with its own toolkits and flyers in 13 languages.

Still, grassroots groups say they are doing the heavy lifting.

These advocates’ outreach efforts go “beyond the walls of the capitol,” said Dr. Dena Hubbard, a neonatologist at Children’s Mercy hospital in Kansas City who chairs the public policy committee of the American Academy of Pediatrics’ Kansas chapter.

“[They’re] going to people, meeting people where they are in their communities, knowing what they need, knowing where they are, and helping them get the services they need,” she said. “I strongly feel that grassroots is where it’s at.”

‘Frustrated and nervous’

Karina Gonzalez’s 18-year-old son only has enough psychiatric medication to get him through the end of December.

The Kansas City, Kansas, mother of four is worried about what will happen next. Her family was dropped from Medicaid coverage in October, and the kids haven’t been able to go to any doctor’s appointments, she said.

Gonzalez’s household relies on the income of her husband, who works in construction.

“It has affected us,” Gonzalez said in Spanish as her 16-year-old daughter translated. She said she feels “frustrated and nervous,” especially amid flu season.

Gonzalez received a letter the first week of October saying the family was no longer covered. She said she didn’t know why they were dropped and struggled with the online KanCare system, which isn’t available in Spanish. That’s when she reached out to El Centro, a community health advocacy group that assists Kansas Latino families. Spanish-speaking patient navigators there have been helping her collect and submit documentation to get re-enrolled, she said.

Matt Lara, chief of staff of the Kansas Department of Health and Environment, said aside from the online portal, applicants and families renewing whose first language isn’t English can call and be connected with a language assistance line.

“Kansas is not a Medicaid Expansion state which means that our eligibility threshold for non-disabled, non-pregnant adults is incredibly low,” Lara said in an emailed statement on the rate of children losing coverage. “As a result, over 2/3 of our enrollees are children, and that results in them being the largest cohort of members losing eligibility.”

In Utah, Oreta Tupola is the program coordinator for the Utah Community Health Workers Association. Her community health workers have been helping families in the Latino and Pacific Islander community reapply.

Families have been calling her from the emergency room after taking a relative there and finding out they no longer have coverage. Many clients of her community health workers suffer from diabetes, high blood pressure and heart disease, and take essential medications for the conditions.

“We started getting calls now from our clients saying, ‘I went to the doctor, or I’m at the ER, and I can’t get in. They won’t see me,’” Tupola said. “[They’d say] ‘I didn’t know I didn’t have coverage.’ Or one of the women that called me said, ‘Hey, I’m trying to go pick up my medicine and when I went to get my medication, that’s when I found out that I don’t have Medicaid anymore.’ Now we’re scrambling to get them back on and approved, which is another long process.”

Many of those who lost Medicaid coverage could qualify for it. Utah has the second-highest rate of people who lost coverage for administrative or paperwork reasons at 94%, following New Mexico at 95%.

New Mexico’s Health Services Department told Stateline in an email that it is using multilingual awareness campaigns along with some of the relaxed federal rules, such as a 30-day delay in procedural terminations, which extends the renewal deadline. As a result, the department asserts it is “seeing minimal eligibility closures.”

Assessing the changes

Last week, in two columns published in the monthly peer-reviewed health care journal Health Affairs, health policy experts addressed the unwinding.

“It should no longer be acceptable to maintain policies and practices that make it so difficult for people to enroll and retain their coverage,” wrote experts from the Center on Budget and Policy Priorities, a research and policy institute that advocates for left-leaning policies. They said the process has cast a light on the nation’s “fragmented” health care system.

Allison Orris, a co-author and senior fellow at the center, said in an interview the continuous enrollment period showed the benefits of minimizing red tape on a larger scale.

The churn “is magnifying some of the challenges that have always existed in systems,” she said. “The pandemic really laid bare a lot of fractures across many social services programs, and in Medicaid, we know that there have always been a high number of people who were eligible for Medicaid but not enrolled — and that is likely a sign that it was too hard to get enrolled and to stay enrolled in coverage.”

Craig Wilson, director of health policy at the Arkansas Center for Health Improvement, co-authored the second column. Georgetown University’s Center for Children and Families reports Arkansas has the largest share of rural children covered by Medicaid. About 59% of Medicaid enrollees lost coverage in Arkansas.

Wilson is calling for a multistate assessment to compare states’ eligibility redeterminations, who was most affected geographically and demographically, and where and whether they found other coverage — or fell through coverage gaps.

“There are some opportunities to learn from what happened here that can be applied in future situations,” especially for at-risk communities, he told Stateline. “If there are states that did some things differently, and were more precise, in identifying people who were either eligible or ineligible, and having them go in the appropriate direction.”

In Arkansas, 77% of the people dropped from Medicaid lost their coverage for procedural reasons, while 23% were dropped because they were deemed ineligible, according to KFF. Children account for more than a third of those who lost coverage in Arkansas.

Meanwhile, about 71% of Arkansans whose coverage was renewed retained coverage via the federal rule that allows states to use previous income records.

Children without coverage

Across 21 states reporting coverage losses by age brackets, 2.4 million, or 40%, of the people dropped from the rolls were children, according to KFF’s analysis.

After Texas at 61%, Gonzalez’s Kansas ranks second among those 21 states in the proportion of children losing coverage, (55%), followed by Idaho (48%), Missouri (47%), Alaska (43%) and Minnesota (42%).

Of the 21 states, Massachusetts had the lowest proportion of children disenrolled at 18%, followed by California at 21%. Some states, such as North Carolina and Kentucky, are keeping kids with pending renewals covered for another year while the states work on eligibility redeterminations.

But experts such as Wilson worry that lack of communication from state Medicaid offices for another year will cause further confusion around coverage.

“Many of those folks may not have had any communication with the Medicaid office in three or more years,” he said. “With a rather transient population, it’s going to become much more of an issue when the span of eligibility rate determination is much longer.”

For now, some grassroots groups are relying on general outreach such as putting up flyers and setting up tables at community events.

Tupola, of the Utah Community Health Workers Association, said she wishes state Medicaid offices supported those on the ground like her organization, especially after national attention on the benefits of grassroots vaccination campaigns throughout the pandemic.

“I think we don’t ever get called to the table until … the numbers are high, people are dying, or people are losing coverage,” she said.

“You need to bring us in from the very beginning.”

States lose track of thousands of foster children each year

Nada Hassanein — Fri, 10 Nov 2023 12:10:50 +0000

A Portland foster care child, Nevaeh Rohrbach, 15, has been missing since Oct. 7, and authorities say she is endangered. Nevaeh previously went missing in July. Authorities are asking the public to call 911, local law enforcement or the Oregon Child Abuse Hotline at 1-855-503-SAFE (7233) if they believe they see her. Recent audits show tens of thousands of children in out-of-home placement go missing. (Courtesy Oregon Department of Human Services)

Sharday Hamilton, a 28-year-old advocate for foster youth, homeless youth and runaways, still bears her own scars from running.

There’s one near her left knee. She got it as a little girl, running away from her foster mother, who was trying to hit her with a bag of frozen food but who sometimes used a skillet or a baseball bat. There are the burns she suffered when she was forced to sit on a hot stove.

Caseworkers and school counselors didn’t visit Hamilton’s foster home in Harvey, Illinois, or check in with her often enough, recalled Hamilton, now a mentor at the National Network for Youth, a nonprofit focused on youth homelessness. And when they did, she said, they missed signs of abuse. “The system failed me,” she said.

Hamilton sometimes spent nights at her friends’ houses to avoid the violence. Many foster kids in similar situations also flee — and some of them don’t come back for weeks, months or ever. Tens of thousands simply disappear from the foster care system, according to several recent reports, putting them beyond the state’s protection and at high risk of sexual exploitation.

Under federal law, state social service agencies must submit a report to the National Center for Missing & Exploited Children, a nonprofit organization established by Congress in 1984, when a child under their care goes missing. They also are required to notify law enforcement, who report missing children to the National Crime Information Center.

But an audit published earlier this year by the U.S. Department of Health and Human Services found that across 46 states, state agencies failed to report an estimated 34,800 cases of missing foster kids. Cases include children who ran away multiple times. The average age, according to the National Center for Missing & Exploited Children, was 15.

“When it comes to teenagers specifically, most child welfare systems just don’t have the right service array, because systems are often built for babies and younger children,” said consultant and attorney Lisa Pilnik, director of Child & Family Policy Associates, a child welfare consulting and research firm.

“We don’t have enough family placements, and we don’t have family placements that are equipped to meet the needs of teenagers,” she said.

‘A lot of difficulties’

Teens often run away or go missing more than once during their time in foster care. The National Center for Missing & Exploited Children report found that about 40% of foster children who were reported missing went missing multiple times — on average, four times — while in state care.

Black and Native American children are overrepresented in foster care and make up a disproportionate number of missing kids. Hamilton was among those Black children. Studies have shown that states are more likely to remove Black children from their homes, and that racial bias is a factor.

“The foster care system is wrought with a lot of difficulties,” said Gaétane Borders, president of Peas In Their Pods, a nonprofit that advocates for missing children of color. “When you add that to the complexities of missing children, reporting of missing children, and how that intersects with human trafficking and sexual exploitation — it is honestly a complete mess.”

Recent reports on some states are equally damning. In Georgia, nearly 1,800 children in state care went missing between 2018 and 2022, according to a new analysis conducted by the National Center for Missing & Exploited Children as part of a U.S. Senate panel’s ongoing probe into Georgia’s child welfare system. More than 20% of those were likely trafficked, Samantha Sahl, supervisor of the center’s child sex trafficking recovery services team, said at a subcommittee hearing Monday.

“[The Georgia Division of Family & Children Services] takes seriously the issue of missing or runaway children and has a 14-page policy memo providing detailed instructions to DFCS case workers on how to handle reported missing children,” lawyers for the agency wrote in response to testimony presented to the Senate panel.

“To further bolster our practices, [the agency] will advocate for changes in state law in the upcoming legislative session to allow more information-sharing with [the National Center for Missing & Exploited Children].”

A U.S. Department of Health and Human Services audit of Missouri, released in 2021, found that in 2019, 978 children went missing from the state’s foster care system. Nearly half of the cases reviewed weren’t reported to either law enforcement or the National Center for Missing & Exploited Children.

“There needs to be more oversight and accountability for checking in on these kids that are in out-of-home placements,” said Jessica Seitz, executive director of Missouri KidsFirst, a child abuse prevention nonprofit.

Seeing warning signs

In most states, overburdened, under-supervised caseworkers are hard-pressed to protect all the children they are responsible for monitoring. And when kids go missing, caseworkers often struggle to prevent it from happening again and again.

Amy Robins, forensic services director of the Child Advocacy Center of Northeast Missouri, said social workers and search teams must figure out whether missing foster kids are running from an out-of-home placement or running to someone — perhaps a sex trafficker — who promises them freedom and a better life. Or if the kids are doing both.

“Typically, the part that we miss with this population is we’re not asking the right questions,” Robins said.

Police and school officials also should be trained to recognize when a foster child — or any child — is being abused or trafficked, said Alexandra Miller, deputy director of the Center for Juvenile Justice Reform at Georgetown University.

“There’s definitely a lack of professionals being able to identify what those warning signs are,” Miller said. Law enforcement or school officials might not realize, for example, that burglary or trespassing by teenagers “could be survival crimes or crimes that are tangential to being trafficked and abused,” she said.

Since the scathing 2021 report, Missouri’s Department of Social Services has created a full-time staff position focused on children missing from state care. The state also told Stateline it has a team dedicated to helping local law enforcement agencies investigate and prosecute neglect, sexual abuse and other crimes committed against children.

And a new Missouri law modifies law enforcement’s “missing child” definition to include “persons under 18 years of age, foster children regardless of age, emancipated minors, or homeless youth.” It also requires child welfare authorities to file a police report within two hours of determining that a child under their care is missing.

Florida also recently passed legislation creating a task force focused on finding children missing from foster care.

“A team should be ready to go and hit the ground to find out if these kids are actually on runaway status, or has anybody snatched them,” said Florida Democratic state Rep. Patricia Williams. “It is our job as adults, as the legislators, to put things in place to protect all of our children.”

This summer, an Arizona bill was signed into law that requires the state’s child welfare department to report a missing foster care child to law enforcement within 24 hours. It also requires law enforcement to notify media outlets within 48 hours.

The bill was introduced two weeks after two teenage girls were found dead in a retention basin after running from a group home.

And last week, the U.S. Senate unanimously approved the bipartisan Find and Protect Foster Youth Act.

The legislation would require the Department of Health and Human Services to evaluate why states are failing to comply with federal rules and to help them remove those obstacles. The measure now awaits House approval.

There needs to be more oversight and accountability for checking in on these kids that are in out-of-home placements.

– Jessica Seitz, executive director, child abuse prevention nonprofit Missouri KidsFirst

Abbi Warmker, the deputy regional inspector general for the U.S. Department of Health and Human Services, said the agency’s Administration for Children and Families must do a better job of holding states accountable for reporting missing foster youth and screening them for sexual exploitation when they are found.

“What we’ve found is that [the Administration for Children and Families] is really good at making sure that states have policies and procedures in place, but they’re not so great at making sure that those policies and procedures are being followed at the state level,” she said.

“The risk for exploitation is so much greater when children are missing from their foster care placements. So, it’s just really critical that there’s oversight at every level — at the state, the local and then also at the federal level.”

Hamilton said her goal as a mentor at the National Network for Youth is to help foster kids advocate for themselves whenever they feel unsafe.

“I want them to know it’s OK to speak up and speak out,” she said. “It was traumatizing, but I’m glad I’m able to live and tell my story.”

Medical exceptions to abortion bans often exclude mental health conditions

Nada Hassanein — Mon, 23 Oct 2023 14:56:42 +0000

More than a dozen states now have near-total abortion bans following the overturning of Roe v. Wade, with limited medical exceptions meant to protect the patient’s health or life.

But among those states, only Alabama explicitly includes “serious mental illness” as an allowable exception. Meanwhile, 10 states with near-total abortion bans (Florida, Georgia, Idaho, Iowa, Kentucky, Louisiana, Ohio, Tennessee, West Virginia and Wyoming) explicitly exclude mental health conditions as legal exceptions, according to an analysis from KFF, a health policy research organization.

Abortion rights advocates and mental health experts say those laws could put women’s lives at risk. A report released last year by the federal Centers for Disease Control and Prevention analyzing maternal deaths between 2017 and 2019 found that that pregnant women and new mothers were more likely to die from mental health-related issues, including suicides and overdoses from substance use disorders, than any other cause. Mental health conditions in total accounted for 23% of maternal deaths with an identified cause.

The Alabama exception, which requires a diagnosis from a psychiatrist in practice for at least three years, doesn’t define “mental illness.” However, it specifies a diagnosis can only be used as an exception “if there is reasonable medical judgment” that the patient might engage in something that could result in her death or loss of the pregnancy.

Florida’s medical exception requires two physicians to certify an abortion is necessary to save the pregnant woman’s life or avoid “serious risk” of substantial impairment to a “major bodily function of the pregnant woman other than a psychological condition.” Similarly, Tennessee’s law reads, “No abortion shall be deemed authorized … on the basis of a claim or a diagnosis that the woman will engage in conduct that would result in her death or substantial and irreversible impairment of a major bodily function or for any reason relating to her mental health.”

If you are in need of support, call or text the National Maternal Mental Health Hotline at 1-833-TLC-MAMA (1-833-852-6262) for free, confidential and 24/7 support, or dial 988 for the Suicide & Crisis Lifeline.

During a special legislative session on abortion in July, Iowa Republican state Rep. Shannon Lundgren defended the exclusion of mental health exceptions during a floor debate, after Rep. Austin Baeth, a Democrat and physician, cited the maternal mental health-related death statistics, the Iowa Capital Dispatch reported.

“I would like to recognize that abortion isn’t a treatment for mental illness,” Lundgren said. “Obviously if we have someone whose life is in danger, a doctor should take an approach to make sure they immediately refer them to inpatient care.”

The National Right to Life Committee, whose model state legislation on abortion bans explicitly exempts abortions “performed on the basis of a claim or a diagnosis that the woman will engage in conduct that would result in her death,” considers mental health exceptions to be untenable because conditions such as anxiety and depression can be treated.

But policies that dismiss mental health as less important than physical health endanger patients, said Dr. Paul Appelbaum, a Columbia University psychiatrist and former president of the American Psychiatric Association and the American Academy of Psychiatry and the Law.

“You can’t take into account a 90% possibility of postpartum psychosis. That clearly should be changed,” Appelbaum said.

“Psychiatric disorders are as real and as treatable as any other medical disorder,” he added. “And to discriminate against people with a vulnerability to disorders developing during or after the partum area is simply unacceptable and unjustifiable.”

Inequities, lack of safety net

When Cindy Herrick of Phoenix, Arizona, became pregnant and gave birth to her son 11 years ago, she felt crushed by intense anxiety.

Thoughts of failure plagued her. “Everyone else looks happy,” she recalled thinking. Meanwhile, “I was scared to touch the baby.”

Herrick suffered depression and anxiety before pregnancy, but they became worse.

“Mental illness wasn’t new to me. The severity of it was new to me,” she said. It took months to find a new combination of psychiatric medications to give her relief. She recalled her husband saying, “I was really worried you weren’t going to make it.”

One in 5 women suffer mental health conditions during pregnancy or postpartum, including depression, anxiety, obsessive-compulsive disorder and, although rare, postpartum psychosis, according to the Maternal Mental Health Leadership Alliance, an organization that advocates for improved mental health care.

Awareness of maternal mental health conditions as crises is critical, said Herrick, a peer support specialist certified in perinatal mental health.

“We have one child because of that,” she said of her own mental health crisis. “I do not want to get pregnant again. And I’m not alone in that.”

Even before the U.S. Supreme Court’s decision in Dobbs v. Jackson Women’s Health Organization last year overturning the federal right to abortion, women with mental health problems faced disproportionate barriers to getting an abortion, said Sarah Roberts, a researcher with the University of California, San Francisco’s Advancing New Standards in Reproductive Health program.

As mental health care remains elusive for many people, experts worry those barriers will be exacerbated.

Fewer than 20 states have state-funded perinatal psychiatry access programs. Thirty-eight states and Washington, D.C., have extended Medicaid coverage for 12 months postpartum, but fewer mental health practitioners accept Medicaid or private insurance compared with other specialties, making it harder for patients to get care.

“People who reported using more substances or having more mental health conditions were more likely to report a policy-related barrier to obtaining an abortion,” Roberts said. In the aftermath of Dobbs, she said, “There’s no reason to believe that things would have become easier.”

Low-income women are disproportionately affected by bans, making cost and travel burdens to get abortions elsewhere. Additionally, the Hyde Amendment, a federal rule renewed annually since 1976, restricts use of federal dollars, including federal Medicaid funds, for most abortions. While 17 states have state-only abortion funds, Hyde affects about 7.8 million reproductive-aged women across more than 30 states where it has effect, according to reproductive health research organization the Guttmacher Institute. Half of those affected are women of color.

Joy Burkhard, the founder and executive director of the Policy Center for Maternal Mental Health, a California-based national nonprofit and think tank where Herrick is a project manager, said the issue should be a bipartisan opportunity to “put systems in place to support women’s mental health delivery.”

Burkhard also stressed that an already taxed health care workforce will be further stressed as more women give birth post-Roe and need care. A report by inequities research organization Mathematica estimated untreated maternal mental health conditions cost $14.2 billion for births in 2017, or $32,000 on average for every untreated mother and her child.

“Everyone’s going to be waiting longer, struggling to access care — and no one’s talking about that,” she said.

Already, an estimated three-quarters of women with mental health conditions are untreated, according to the nonprofit advocacy group Maternal Mental Health Leadership Alliance.

“They need to be offered [mental health care] in a way that a birthing person doesn’t have to scramble to find those services,” said Isha Weerasinghe, a senior mental health policy analyst at the Center for Law and Social Policy, a national nonprofit based in Washington, D.C., focused on addressing poverty barriers.

She said policymakers need to define “medical necessity” for abortions more broadly, by considering what a pregnancy and birth will mean for a woman’s mental health.

Many of the states with strict abortion bans have large communities of color, and Black women are three times as likely and Indigenous women twice as likely as white women to die of pregnancy-related causes.

The CDC’s analysis found mental health-related conditions were the top cause of maternal deaths among Hispanic, white, and American Indian and Alaska Native mothers.

Black women also face disproportionate risk — twice as likely as white moms to suffer from a maternal mental health condition but half as likely to get treatment, according to the Maternal Mental Health Leadership Alliance.

The CDC’s analysis also included a specific report on maternal deaths for American Indian and Alaska Native people, who are more than twice as likely as white mothers to die of pregnancy-related causes but often undercounted in health data due to misclassification. More than 90% of these mothers’ deaths were preventable, the CDC analysis found, with most of their total deaths due to mental health conditions, followed by hemorrhage.

Dr. Allison Kelliher, who is Koyukon Athabascan, Dena, from Nome, Alaska, is a family medicine physician and a researcher at Johns Hopkins School of Nursing and Bloomberg School of Public Health Center for Indigenous Health. She’s practiced and taught medical students in North Dakota, and said the strict abortion bans ignore the disproportionate illnesses and lack of access to care Indigenous people in rural areas already face. Indian Health Service-run clinics are allowed to provide abortions only in rare circumstances, and patients are often forced to cross state lines or drive hours for care.

But, Kelliher said, many young Indigenous people may not have “the privilege of money, of a vehicle, of a provider who knows them.” In addition to disproportionate poverty rates, tribal women are at higher risk of violence and assault, all of which contribute to increased risk of mental health burdens, she added.

“When you couple that with the very stressful experience of pregnancy … you can see why we’re so vulnerable during that time, when we might be suffering from increased risk of mental illness,” she said.

Higher risk, opportunities for prevention

Clinicians, advocates and policy experts fear that abortion bans will cause even more pregnant women and new mothers to need mental health care.

“There’s no question that there’s going to be increased demand for mental health services, both during pregnancy, for women with unwanted pregnancies … and after delivery,” Applebaum, of Columbia University, said.

UC San Francisco’s landmark, oft-referenced Turnaway Study, which followed women for more than a decade who were denied abortions because their pregnancies were past the gestational age limits, found these women were more likely to suffer anxiety and poverty and to stay tethered to an abusive partner.

Pregnancies as a result of rape and incest often need law enforcement involvement to allow for an abortion, and can have chronic, traumatic repercussions on a woman.

Women with previous mental health conditions are at higher risk of developing depression during pregnancy or postpartum according to the National Institutes of Health, and if a woman experienced postpartum depression previously, she’s at higher risk of developing it again. While postpartum psychosis is rare, women with a history or family history of bipolar disorder or psychosis are at higher risk, but many women may develop it for the first time in their life postpartum, said Dr. Adjoa Smalls-Mantey, a psychiatrist at New York-Presbyterian Brooklyn Methodist Hospital.

Some medications to treat psychosis or bipolar disorder, particularly lithium and valproic acid, may cause severe birth defects, especially during the first trimester, she said. Women on these medications are strictly placed on contraception.

But unexpected pregnancies may still occur.

“Say you do have a pregnancy that is unexpected, and you end up having a fetus that has a severe defect that for some may not result in a viable pregnancy, or if it does, can be extremely challenging and devastating,” Smalls-Mantey said. “A lot of options are restricted, and then the child, the mom, have a lot of challenges in their life going forward.”

“I just really fear for the people that don’t even have the resources, what options they’re turning to, and if even more women are becoming suicidal or attempting suicide as a result of this very sentinel event in their lives that they’re not ready for,” she said. “How desperate they could become that they would try to end their life.”

Insurers often shortchange mental health care coverage, despite a federal law

Nada Hassanein — Thu, 12 Oct 2023 12:15:20 +0000

A man jogs past a sign about crisis counseling on the Golden Gate Bridge in San Francisco. The Biden administration is pushing insurers and state regulators to improve mental health care coverage (Eric Risberg/The Associated Press)

When she tried to find help for her daughter’s depression, Michelle Romero was frantic, panicked and heartbroken. She searched and searched for mental health clinicians within her daughter’s insurance coverage network.

But the Houston-area mom of three couldn’t find a psychiatrist nor a psychotherapist who accepted her daughter’s health insurance and was close enough to the family’s neighborhood, she said. In her network, one clinician had closed their practice. Another was at capacity with patients.

So, each week, the family paid about $300 out of pocket for their daughter’s psychotherapy and psychiatry sessions. Romero has maxed out her credit cards.

At Christmastime last year, Romero’s daughter was hospitalized for two weeks. Then 14, she had tried to kill herself. It wasn’t her first attempt: That was when she was a 10-year-old fifth grader.

The family began the new year with a $30,000 hospital bill, of which insurance paid just a portion.

If you or someone you know is in need of help, dial 988 for the Suicide & Crisis Lifeline for free and confidential support or text HELLO to 741741 for the Crisis Text Line.

The Biden administration is pushing insurers and state regulators to improve mental health care coverage. The move comes as overdose deaths rise and youth mental health problems grow more rampant, disproportionately affecting communities of color. Inflation and a shortage of mental health care providers, including psychiatrists and specialists who treat adolescents, further hinder access to care.

“Something needs to change,” Romero said. “There are too many people who need help. And there’s not enough doctors.” Insurers, she said, “need to do better.”

The federal Mental Health Parity and Addiction Equity Act, enacted in 2008, doesn’t require insurance plans to offer mental health coverage — but if they do, the benefits must be equal with coverage for other health conditions. That means deductibles, copayments, out-of-pocket limits and prior authorizations — approvals from health plans for a particular service or to fill a prescription — can’t be more stringent than those for other medical care.

But despite the federal law, many insurers continue to charge higher copayments for mental health care, limit the frequency of mental health treatment, or impose more restrictive prior authorization policies, according to The Kennedy Forum, a nonprofit that advocates for equal mental health coverage. A joint report provided this year to Congress by the Department of Labor, the Department of Health and Human Services and the Department of the Treasury validated those assertions.

The Biden administration recently proposed a rule that would strengthen parity under the law by requiring that insurers show how their coverage rules affect patients by, for example, sharing denial rates for mental health care claims compared with other claims. The insurers also would have to provide data on other restrictions, such as prior authorization.

The new rule also would close a loophole that has allowed more than 200 state and local government health insurance plans to opt out of the law. The administration has extended a public comment period through Oct. 17.

Since the parity law was enacted 15 years ago, “nobody can claim that we’ve achieved parity,” said Shawn Coughlin, president and CEO of the National Association for Behavioral Healthcare, a nonprofit that represents mental health care providers, programs and facilities. Coughlin said the problem is prevalent across the board — from private insurance plans to Medicaid managed care.

To provide greater oversight, some states have passed their own parity policies. Over the past decade, 10 states have fined insurance companies a total of nearly $31 million for violating parity rules, according to The Kennedy Forum. And since 2018, 17 states have passed legislation requiring insurers to demonstrate compliance on an annual basis, according to the Council of State Governments.

“We’ve been playing this rope-a-dope with them [insurers] now for 15 years. And the fact is that without more stringent enforcement, plans have just basically scoffed at the law and have ignored the law,” Coughlin said. “This is why states have stepped in … because the federal parity law really just does not have any real teeth in this enforcement.”

In most states, patients with private insurance have to go out-of-network for behavioral health care more often than they do for other health care, reports The Kennedy Forum. Narrower networks are a notorious problem for mental health care, compounded by clinician shortages. In Texas, where Romero lives, about 98% of the state’s counties are at least partially designated as mental health professional shortage areas.

In a collaborative with other groups, including Health Law Advocates and the Treatment Research Institute, the nonprofit created a state parity policy tracker and compiled a list of resources to help patients find their state regulators to submit a parity violation claim.

Shortages and dismal reimbursement rates

When her daughter’s asthma flares up, Maria Garcia has no problem getting her insurance to cover a visit to the pediatrician.

But when her sixth grade girl began to suffer severe anxiety — sobbing daily, cutting off her hair and trying to hurt herself — she couldn’t find a psychologist that accepted their insurance and took new patients. The ones who did had a six-month wait time.

Garcia and her husband had to pay out of pocket — around $200 per therapy session each week on top of home-schooling expenses. Garcia had to pull her daughter out of school last year because of her severe anxiety.

“I was desperate. I felt really powerless,” Garcia said in Spanish through an interpreter. “My daughter was saying she wanted to kill herself.”

After months of searching, Garcia found Community Does It, a nonprofit that offers free, culturally competent therapy sessions for immigrant families.

But other nonprofits haven’t been able to remain in operation. Last month, Phoenix House Texas, a drug rehabilitation program for low-income Texas youth, closed its doors, citing unsustainable reimbursement rates.

Because insurers typically reimburse mental health care providers at lower rates than other providers, psychiatrists are less likely to participate in insurance plans, studies show. This forces patients to pay out of pocket, or, if their coverage includes mental health care, file an insurance claim to get partial reimbursement, assuming they’ve met their annual deductible.

“Psychiatrists are actually paid a lot more to deliver services out-of-network than they are to deliver service in-network, which is a clear, natural disincentive to participating in insurance or accepting insurance,” said Dr. Jane Zhu, a primary care physician and professor at Oregon Health & Science University’s Center for Health Systems Effectiveness. “There is a lot of evidence that suggests that these low participation rates amongst psychiatrists in particular are driven in part by low reimbursement.”

Zhu, who researches mental health parity and access to care, noted about 27 states and Washington, D.C., have reported increases in or plans to increase Medicaid reimbursement rates for behavioral health services between 2022 and this year. But in many states, the rate change is minimal.

States parity statutes vary

The American Psychiatric Association created model parity legislation tailored to each of the 50 states and Washington, D.C., with a focus on insurer and state regulator accountability.

Right now, parity policies vary widely, but some states have been making strides toward tightening their rules. Georgia, which the research and advocacy nonprofit Mental Health America ranks 47th in provider availability at 640 residents per mental health provider, last year began requiring health insurers to use “generally accepted” health care standards when reviewing claims, instead of their own non-scientific criteria. Sometimes, insurance plans will deny coverage, claiming the care isn’t medically necessary.

“The whole thing about parity is realizing that mental health and physical health are the same,” said Kim Jones, executive director of Georgia’s National Alliance on Mental Illness chapter.

Like Romero and Garcia, Jones couldn’t find an in-network clinician for her own 9-year-old son, who suffered panic attacks. He was on a three-month wait list for a psychologist, an hour away and out-of-network.

Meanwhile, statutory language in other states, such as Florida, poses more hurdles.

The state — 46th in access to care, according to Mental Health America’s report — requires insurance plans to offer “optional coverage” for mental health conditions.

“The insurance company or the employer can offer or choose to offer it as part of their package. It doesn’t mandate it,” explained Marni Stahlman, president and CEO of the Mental Health Association of Central Florida. “That’s where we see the loophole.”

What’s more, the statute says a plan can limit outpatient mental health treatment to a maximum of $1,000.

“If benefits are provided beyond the $1,000 per benefit year, the durational limits, dollar amounts, and coinsurance factors thereof need not be the same as applicable to physical illness generally,” the Florida statute reads.

Cherlette McCullough, an Orlando, Florida-based mental health counselor who recently began accepting insurance, said one client’s plan only covers five sessions of psychotherapy.

“It’s extremely limited,” McCullough said. “There can be one traumatic incident where treatment needs about 13 sessions to work through it. So, what happens after she completes those five sessions?”

It would be “unheard of,” Stahlman of the Mental Health Association of Central Florida said, if a breast cancer patient “was told that she could have three sessions of chemotherapy.”

Back in Texas, many therapy sessions later, Romero’s daughter is better and recovering.

Months ago, Romero had emptied out the medicine cabinet for fear of her daughter using pills.

In their place, Romero left a message.

She cut a heart out of pale yellow construction paper and pasted it inside for her daughter. On it she wrote the words:

“You are worth it. You are loved.”

Congenital syphilis rates are soaring, but resources to stem infections are lacking

Nada Hassanein — Fri, 29 Sep 2023 15:00:42 +0000

Newborns rest in the nursery of a recovery center. States are seeing an alarming surge in cases of congenital syphilis, a preventable infection that can lead to miscarriage, stillbirth, newborn death — or lifelong complications such as blindness or deafness (Seth Wenig/The Associated Press).

States are seeing an alarming surge in cases of congenital syphilis, a preventable infection that can lead to miscarriage, stillbirth, newborn death — or lifelong complications such as blindness or deafness.

Congenital syphilis, which occurs when a pregnant mother infected with the sexually transmitted infection syphilis passes it on to her fetus, disproportionately affects Black and Indigenous babies. It has seen a steady rise over the past decade, and during the pandemic between 2020 and 2021, cases rose 32%, from 2,157 to 2,855, according to the federal Centers for Disease Control and Prevention.

That’s about eight times the 358 babies born with the infection in 2011.

Across the nation, the congenital syphilis rate was highest in states in the South and Southwest. In 2021, Arizona had the highest rate, at about 232 cases per 100,000 births, followed by New Mexico (205), Louisiana (191), Mississippi (182) and Texas (182).

Nationwide in 2021, 102 babies born to American Indian and Alaska Native mothers had congenital syphilis — giving that group the highest rate, at about 385 per 100,000 births, followed by 29 Native Hawaiian and Pacific Islander babies, at a rate of 192 per 100,000.

Babies born to Black mothers had the highest number of overall cases, 885, or nearly 170 per 100,000 births, and those born to Hispanic or Latino mothers saw a rate of 96 per 100,000 births. There were 782 cases of babies with congenital syphilis born to white mothers, about 41 per 100,000 births.

While the CDC hasn’t yet released official figures for last year’s cases, a study on Mississippi released last week in the agency’s journal Emerging Infectious Diseases found a 1,000% surge in the state — from 10 cases in 2016 to 110 last year.

Experts say a confluence of factors are at play in the rise and the disparities, including poverty, stigma, a lack of access to prenatal care, drug use, a need for more medical education and screenings, and a lack of funding for public health efforts.

Irreversible complications

Syphilis is a sexually transmitted infection that, if left untreated, can cause serious health problems, including brain and nerve issues as well as blindness.

An infected pregnant mother can pass syphilis on to her fetus. Babies born with congenital syphilis who aren’t treated within the first three months of life are more likely to suffer irreversible complications such as deafness or blindness, according to the CDC. Nearly 40% can be stillborn or die as a newborn.

Parents might not know they have syphilis, as it can occur with mild or no symptoms. Babies can also be born without symptoms or develop skin rashes, jaundice, bone damage, anemia, enlarged organs or meningitis. Syphilis is treatable with antibiotics such as penicillin, though drugmaker Pfizer recently warned of a looming shortage of its medication for the disease into next year.

The steady reemergence of the treatable disease mainly points to failures in public health systems, said Dr. Daniel Edney, state health officer of the Mississippi State Department of Health and an internal medicine physician.

“Syphilis has not thrown us a curveball. Syphilis is doing what syphilis has done for thousands of years, and the treatment has not changed,” he said. “This is absolutely preventable. What we need are the resources.”

Missed screenings of asymptomatic babies can inhibit intervention and can cause permanent disabilities. Blindness and deafness can take a couple of months to a couple of years to manifest, said Dr. Charlotte Hobbs, a pediatrician and infectious disease specialist at the University of Mississippi Medical Center.

“We’ve had cases of babies who have fallen through the cracks, and by the time we see them, even in a couple of months of age, they are neurologically devastated,” Hobbs said.

It wasn’t until March that the Mississippi State Department of Health began mandating screenings during the first and third trimesters of pregnancy, and during labor if the patient has no previous documentation of syphilis testing.

Seven other states, according to a 2021 CDC analysis, don’t mandate testing at any point during pregnancy. Just 18 states plus Washington, D.C., require third trimester screening, with five of those requiring it only if there’s high risk. Only a dozen states require screening during delivery, with seven of them requiring it only if there is increased risk.

But to stem the soaring rates, experts such as Houston-based obstetrician and gynecologist Dr. Irene Stafford say clinicians need to move past relying on these mandates: Health professionals should screen everyone wherever they show up for care, whether they seem at risk or not, if they have the possibility of becoming pregnant or getting someone pregnant, she said.

“It’s screening at any opportunity, instead of siphoning it into just a prenatal visit,” said Stafford, an associate professor at UTHealth Houston McGovern Medical School. Texas had 680 cases in 2021.

“Not everybody has prenatal care,” she said. “Not everybody gets access to prenatal care quickly — especially the underserved minority population.”

A lack of access

Rural communities in the South and Western states have large populations of Black, Hispanic and Indigenous people whose maternal health care has vanished as rural hospitals and clinics shutter. It’s well documented that people lacking a medical doctor or transportation may instead visit emergency rooms for care, so clinicians should increase testing there, Stafford said.

The pandemic disrupted testing and well-woman visits, but the nation hit a 20-year high in congenital syphilis cases in 2018, before the pandemic.

In Mississippi, the increase was likely not exacerbated much by the pandemic, said Dr. Thomas Dobbs, an expert on sexually transmitted infections and dean of the School of Population Health at the University of Mississippi.

“Services have been moving out of health departments for many years, with cutbacks in our public health infrastructure,” said Dobbs, a former Mississippi state health officer and co-author of last week’s study.

Edney, of the Mississippi State Department of Health, noted that the state last year rejected a request from his department to hire 100 public health nurses to help rebuild a slashed workforce.

Edney said his agency has experienced “a drastic reduction in funding,” including a significant cut to a workforce tasked with fighting syphilis and other sexually transmitted infections. These are field epidemiologists that the National Coalition of STD Directors calls the “heart and soul” of prevention.

“I’m just having to cannibalize funds everywhere I can to invest into this space so we can get our arms around the whole syphilis problem, which spills over into pregnancy that generates the congenital syphilis cases,” Edney said.

In Mississippi, half of counties are so-called maternity care deserts, or counties without any obstetric centers or maternal health care clinicians. Mississippi also ranks in the bottom 10 states in per capita state public health funding at $16 per resident, according to the University of Minnesota State Health Access Data Assistance Center.

Getty Israel, founder of the nonprofit women’s health clinic Sisters in Birth in Jackson, Mississippi, said a long-standing barrier for her community-level work is lack of funding and willingness from Mississippi agencies to partner with her on-the-ground team.

“We do the best we can with our community health workforce. We don’t have the funding that hospitals have,” she said.

Stigma, social factors

Stigma, shame, fear of racism and judgment can hinder patients’ open communication with clinicians, says family nurse practitioner Natassia Williamson in Glendale, Arizona. The state saw the highest congenital syphilis rate in the nation in 2021, as well as a 449% syphilis increase among women since 2015, according to the state.

“I’ve had patients who, when they come to see me … [say], ‘I don’t want to see that provider because I think that they’re just mean,’ or they think they might be racist,” said Williamson, who has worked in tribal clinics.

Underscoring racial disparities in cases, syphilis is also a highly stigmatized disease with roots in medical violations toward Black people — notably, the federal Tuskegee syphilis study that withheld treatment from Black men for more than 40 years.

Williamson said providers need to be deliberate about cultivating trust. Research has also shown a higher risk of intimate partner violence at play.

“One of the main barriers is the trust in the system,” she said. “If they confide in you that they have a background where they’re at risk, be compassionate, and just treat them how you would want someone to treat you if you were in that situation.”

Community health workers are also key to fighting the spread, Israel said. That includes disease intervention specialists who are trained to provide non-judgmental sexual health education.

Infections are disproportionately high in men who have sex with men, who — along with men who have sex with men and women — made up more than a third of the 53,000 cases of primary- and secondary-stage syphilis in 2021.

“We’re not tracking partners like we used to. There’s not that infrastructure,” said Dobbs, who added that STI testing is increasingly moving from public health clinics to private health clinics, limiting testing access for disadvantaged patients. Arizona spends less per capita on public health — $15 — than any other state.

Dr. Veronica Gillispie-Bell, an OB-GYN and medical director at New Orleans-based Ochsner Health and the Louisiana Perinatal Quality Collaborative, said men lack regular checkups for STDs.

Unlike well-woman appointments, “Guys don’t have anything like that. They don’t have a ‘well-man’ exam that STD testing would be part of,” she said. “There isn’t a routine screening for men.”

You might need an ambulance, but your state might not see it as ‘essential’

Nada Hassanein — Mon, 11 Sep 2023 18:42:14 +0000

The Rosebud Sioux Tribe’s EMS team staff the single ambulance station that serves their reservation in rural South Dakota (Courtesy of Rosebud Sioux Tribe Communications Department).

When someone with a medical emergency calls 911, they expect an ambulance to show up.

But sometimes, there simply isn’t one available.

Most states don’t declare emergency medical services (EMS) to be an “essential service,” meaning the state government isn’t required to provide or fund them.

Now, though, a growing number of states are taking interest in recognizing ambulance services as essential — a long-awaited move for EMS agencies and professionals in the field, who say they hope to see more states follow through. Experts say the momentum might be driven by the pandemic, a decline in volunteerism and the rural health care shortage.

EMS professionals have been advocating for essential designation and more sustainable funding “for longer than I’ve been around — longer than I’ve been a paramedic,” said Mark McCulloch, 42, who is deputy chief of emergency medical services for West Des Moines, Iowa, and who has been a paramedic for more than two decades.

Currently, 13 states and the District of Columbia have passed laws designating or allowing local governments to deem EMS as an essential service, according to the National Conference of State Legislatures, a think tank that has been tracking legislation around the issue.

Those include Connecticut, Hawaii, Indiana, Iowa, Louisiana, Maine, Nebraska, Nevada, Oregon, Pennsylvania, South Carolina, Virginia and West Virginia.

And at least two states — Massachusetts and New York — have pending legislation.

Idaho passed a resolution in March requiring the state’s health department to draft legislation for next year’s legislative session.

Meanwhile, lawmakers in Wyoming this summer rejected a bill that would have deemed EMS essential, according to local media.

“States have the authority to determine which services are essential, required to be provided to all citizens,” said Kelsie George, a policy specialist with the National Conference of State Legislatures’ health program.

Among those states deeming EMS as essential services, laws vary widely in how they provide funding. They might provide money to EMS services, establish minimum requirements for the agencies or offer guidance on organizing and paying for EMS services at the local level, George said.

The lack of EMS services is acute in rural America, where EMS agencies and rural hospitals continue to shutter at record rates, meaning longer distances to life-saving care.

“The fact that people expect it, but yet it’s not listed as an essential service in many states, and it’s not supported as such really, is where that dissonance occurs,” said longtime paramedic Brenden Hayden, chairperson of the National EMS Advisory Council, a governmental advisory group within the U.S. Department of Transportation.

More financial support

There isn’t a sole federal agency dedicated to overseeing or funding EMS, with multiple agencies handling different regulations, and some federal dollars in the form of grants and highway safety funds from the Department of Transportation. Medicaid and Medicare offer some reimbursements, but EMS advocates argue it isn’t nearly enough.

“It forces it as a state question, because the federal government has not taken on the authority to require it,” said Dia Gainor, executive director for the National Association of State EMS Officials and a former Idaho state EMS director. “It’s the prerogative of the state to make the choice” to mandate and fund EMS.

In states that don’t provide funding, EMS agencies often must rely on Medicaid and Medicare reimbursements and money they get from local governments.

Many of the latter don’t have the budgets to pay EMS workers, forcing poorer communities to turn to volunteers. But the firefighter and EMS volunteer pool is shrinking nationally as the volunteer force ages and fewer young people sign up.

Overhead for EMS agencies is expensive: A basic new ambulance can cost $200,000 to $300,000. Then there are the medicine and equipment costs, as well as staff wages and farther driving distances to medical centers in rural areas.

By contrast, police departments are supported and receive funds from the U.S. Department of Justice along with local tax dollars, and fire departments are supported by the U.S. Fire Administration, although many underserved areas also rely on volunteer firefighters to fill gaps.

“We need more if we’re going to save this industry and [if] we’re going to be available to treat patients,” Hayden said. “EMS in general represents a rounding error in the federal budget.”

What’s more, reimbursements only occur if a patient is taken to an emergency room. Agencies may not receive compensation if they stabilize a patient without transporting them to a hospital.

Gary Wingrove, president of the Paramedic Foundation, an advocacy group, has co-authored studies on the lack of ambulance service and on ambulance costs in rural areas. The former Minnesota EMS state director argues that reimbursements should be adjusted on a cost-based basis, like critical-access medical centers that serve high rates of uninsured patients and underresourced communities.

A rural crisis

About 4.5 million people across the United States live in an “ambulance desert,” and more than half of those are residents of rural counties, according to a recent national study by the Maine Rural Health Research Center and the Rural Health Research & Policy Centers. The researchers define an ambulance desert as a community 25 minutes or more from an ambulance station.

Some regions are more underserved than others: States in the South and the West have the most rural residents living in ambulance deserts, according to the researchers, who studied 41 states using data from 2021 and last year.

In South Dakota, the Rosebud Sioux Reservation covers a 1,900-square-mile area in the south-central part of the state.

State Rep. Eric Emery, a Democrat, is a paramedic and EMS director of the tribe’s sole ambulance station, providing services to 11,400 residents.

Emery and his colleagues respond to a variety of critical calls, from heart attacks to overdoses. They also provide care that people living on the reservation would otherwise get in the doctor’s office — if it didn’t take the whole day to travel to one. Those services might include taking blood pressure measurements, checking vital signs or making sure that a diabetic patient is taking their medicine properly.

Nevertheless, South Dakota is one of 37 states that doesn’t designate emergency medical services as essential, so the state isn’t required to provide or fund them.

While he and his staff are paid, remote parts of the reservation are often served by their respective county volunteer EMS agencies. It would simply take Emery’s crew too long — up to an hour — to arrive to a call.

“Something I wanted to tackle this year is to really look into making EMS an essential service here in South Dakota,” Emery said. “Being from such a conservative state that’s very conservative when it comes to their pocketbook, I know that’s probably going to be a really hard hill to climb.”

Ultimately, Wingrove said, officials need to value a profession that relies on volunteers to fill funding and staffing gaps.

“We’re looking for volunteers to make decisions about whether you live or die,” he said.

“Somehow, we have placed ourselves in a situation where the people that actually make those decisions are just not valued in the way they should be valued,” he said. “They’re not valued in the city budget, the county budget, the state budget, the federal budget system. They’re just not valued at all.”

Despite federal warnings, red and blue states aggressively cull Medicaid rolls

Nada Hassanein — Sat, 26 Aug 2023 10:55:25 +0000

Protesters march to the Arkansas Capitol on Aug. 22 to deliver a letter to Republican Gov. Sarah Huckabee Sanders’ office detailing the difficulties they have had with the state’s Medicaid program. Republican- and Democratic-led states have removed millions from their Medicaid rolls since April, when pandemic-era protections ended. (Tess Vrbin/Arkansas Advocate)

Despite federal warnings to slow down, both red and blue states have cut off Medicaid coverage for nearly 4 million people because they lack the proper paperwork. In at least four states, half of all the people who have lost coverage for any reason are children.

During the pandemic, the federal government directed states not to remove anyone from Medicaid, the joint federal-state health care program for low-income people and people with disabilities. But states were cleared to resume eligibility and paperwork checks starting April 1.

As of Wednesday, nearly three-quarters of the roughly 5.4 million Medicaid recipients who’ve lost coverage were terminated because of “procedural” reasons, according to an analysis from KFF, a health care policy research organization. (Results were based on the responses from 39 states and the District of Columbia.)

Those removals happened due to an incomplete renewal process, whether because of missing paperwork, outdated contact information or a renewal form not sent by a specified date.

This month, the Centers for Medicare & Medicaid Services (CMS) mailed letters to every state, saying long wait times and high procedural termination rates might violate federal regulations to keep those who are eligible enrolled.

The letters came weeks after federal officials raised concerns about overzealous efforts to purge the rolls and gave states extra flexibility to re-enroll patients. Some states, such as Maine, paused removals.

The process has proven confusing for many patients, such as those whose first language isn’t English or those who don’t have computers.

It's an injustice if somebody is denied just because of paperwork.

– Scott Anglemyer, policy director at Community Care Network of Kansas

Experts and advocates say grassroots efforts are needed to reach former recipients and help people re-enroll, stressing that lack of coverage threatens the health of vulnerable communities, including people of color, who make up a disproportionate number of Medicaid enrollees, as well as rural residents and children.

Public health professionals know poverty often leads to poor health, and the pandemic impeded critical and preventive care.

“Care got delayed, screenings got put off, therapies got interrupted,” said emergency medicine physician Dr. Georges Benjamin, executive director of the American Public Health Association, an advocacy group that represents public health professionals. Now, “they don’t have a mechanism to pay for their care. Their care is delayed even further.”

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‘Across the board’

Texas has terminated coverage for more than half a million people, more than any other state, out of about 5.9 million Medicaid recipients, and 80% of them were removed for procedural reasons, according to the KFF analysis. About 408,000 Floridians have lost coverage out of about 5 million, more than half for procedural reasons.

Texas and Florida are Republican-dominated states that have declined to expand Medicaid under the Affordable Care Act, also known as Obamacare. But Democratic strongholds that have opted for expansion also have removed tens of thousands of people for procedural reasons. New Mexico (97%), Washington (90%), Connecticut (87%), Minnesota (85%), California (85%), Rhode Island (73%), Colorado (67%), Vermont (66%), Maryland (65%) and New York (53%) are among the 34 states plus the District of Columbia (90%) where more than half of people were removed for failing to file the proper paperwork.

California, New York and Washington state are among the states that have terminated the most people since April. In California, 255,000 people were removed from the rolls for procedural reasons. In New York, about 179,000 removals were procedural, and in Washington state, 247,500 removals were for administrative reasons.

Cadence Acquaviva, spokesperson for the New York State Department of Health, argued the KFF reports are a “snapshot in time” and don’t reflect those who transitioned to other lower-cost state health plans established under the Affordable Care Act.

“It remains the Department’s goal to maintain affordable, high quality health coverage for New Yorkers who qualify throughout the ongoing redetermination process,” Acquaviva wrote in an email to Stateline. She said as of July 31, more than 83,000 of the more than 300,000 people removed were found eligible for and enrolled in other health plans.

California and New Mexico did not respond to Stateline requests for comment before publication.

A spokesperson for Republican Gov. Sarah Huckabee Sanders of Arkansas — a GOP-dominated expansion state, where 77% of about 300,000 removals were procedural — told local media this week that the state has been abiding by state and federal law.

“[The Department of Human Services] is using every tool to ensure people who are eligible remain covered and working with those who are no longer eligible to get coverage through their job or the healthcare marketplace,” spokesperson Alexa Henning told the Arkansas Advocate.

In a handful of states, most people were removed from the Medicaid rolls because they were no longer eligible, not for technical reasons. In Michigan, for example, only 17% of more than 23,000 removals were procedural. The state’s Department of Health and Human Services said in a statement it has also simultaneously renewed enrollment for 121,000 recipients, and that it is reinstating people who remain eligible for the program but were removed for procedural reasons.

In Texas, where Latino households rank lowest in median household income, the state health department says it’s working with community organizations to conduct outreach efforts.

“This includes sending notices, text messages and robocalls, hosting community renewal assistance events throughout the state as well as leveraging community partners to assist with outreach efforts. We’re collaborating with health care providers, community organizations, and advocacy groups to reach a wide range of individuals who may be affected by the changes,” a spokesperson told Stateline in an emailed statement.

Sonia Lara, director of outreach and enrollment at the Texas Association of Community Health Centers, said her agency worked on Spanish radio ads to reach families and is getting the word out to patients to make a free appointment for help with health centers’ staff.

“We aren’t done with the messages,” she said. “We’ve been doing this for a long time. Outreach is part of our fiber.”

A report by UnidosUS, a Latino civil rights organization, found stark disparities in average wait times to Florida’s Medicaid call center: The average English-speaking caller had to wait 36 minutes before being connected with a representative, compared with Spanish-speaking callers, who had to wait 2 1/2 hours on average. Similarly, nearly a third of Spanish-language calls were disconnected before the caller reached a representative, compared with just 10% of English calls.

The issue is problematic for households where adults and caregivers work multiple jobs, don’t have the flexibility to wait on the call, or don’t have computers to file applications online, said Andrea Vendetti, a senior program manager at the Clearwater, Florida-based nonprofit Hispanic Outreach Center. Many of her clients missed renewal windows and must reapply from the beginning, delaying care even further, she said.

In California, where about half of Medicaid recipients are Hispanic and roughly 30% are Spanish speakers, 53% of those removed from the rolls are Hispanic, according to data from the state’s Department of Health Care Services. Earlier this month, two health care advocacy groups called on the state to ratchet up its outreach efforts.

“Language accessible information and culturally responsive trusted messengers must be prioritized to keep these populations enrolled in life-saving health programs,” said Dr. Seciah Aquino, executive director of the Latino Coalition for a Healthy California.

Children and rural residents

Of the 15 states that reported total removals by age group, Texas reported the highest percentage of children removed, at 81%, followed by Idaho, Kansas and Missouri, where at least half of those removed were children, according to KFF.

In Kansas, about 52% of Hispanic or Latino children live below 200% of the poverty level, compared with 27% of white children, according to the Annie E. Casey Foundation Kids Count Data Center. Pediatrician Dr. Gretchen Homan sees families in the Wichita area and said many of her patients need more support.

The clinic has a full-time translator and a social worker who is helping families navigate renewals. Nearly 80% of Homan’s patients are on Medicaid, and many speak English as a second language or have complex health conditions such as cerebral palsy or autism.

One mother, whose children have chronic illnesses, told Homan she’d been awaiting renewal packets, only to find that the mailbox she shares with a neighbor was too full. Mail wasn’t being delivered and instead was sent back.

“She said, ‘This is really hard, and my kids have been without their medicine for the last month,’” Homan recalled.

Because Kansas has not expanded Medicaid eligibility, “fewer members are able to be renewed through the passive process,” said Matthew Lara, communications and legislative affairs director of the Kansas Department of Health and Environment. Kansas is one of the 11 states for which KFF did not have a breakdown of how many removals were procedural.

“Expanding Medicaid would increase passive renewal rates, decrease the number of members who would be at risk for procedural termination, and decrease call volumes,” he wrote to Stateline in an email.

He also said the letter from CMS is based on data from May, and the Kansas department has since made adjustments to address concerns, such as adding a chatbot to the KanCare website, hiring more call center staff and allowing renewals when no income data is returned.

Community Care Network of Kansas, a coalition of community health centers that includes low-income and rural health clinics, provides outreach training to clinics’ staff. The agency released social media renewal toolkits in English and Spanish for health centers to post on their social media pages and share.

“It’s an injustice if somebody is denied just because of paperwork, just because of administrative things,” said Scott Anglemyer, the network’s policy director. “That’s not right, and that’s not the purpose of government. The purpose of government is to help citizens thrive, and if we’re kicking people off just because of administrative reasons, we’re not helping them.”

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