The number of U.S. mpox cases has more than doubled compared with last year, and the federal Centers for Disease Control and Prevention has been urging clinicians across states to encourage vaccinations for those at risk.

As of May 25, the nation had seen a roughly 150% increase in cases of the disease formerly known as monkeypox — from 434 at that time last year to 1,089 this year, according to the CDC. About a third of the cases are in New York state, New York City (which the CDC reports separately), New Jersey and Pennsylvania.

Anyone can contract mpox, a viral disease that can cause a rash, pain severe enough to require hospitalization and — in rare cases, primarily in patients with other complications — death. But during 2022’s U.S. outbreak, the contagious infection mainly affected men in gay and bisexual communities. While it’s not a sexually transmitted infection, mpox can be passed through skin-to-skin contact, respiratory droplets or contact with bodily fluids.

June is Pride Month, and public health experts are concerned about a potentially higher caseload this summer as people gather for large celebrations. Experts are encouraging vaccination outreach, especially to Black and Hispanic LGBTQ+ people, who are less likely to be vaccinated and more likely to face barriers to getting care.

Those who are at highest risk for mpox, including men who have sex with men and people with advanced HIV, should receive two doses, four weeks apart, of the trademarked Jynneos vaccine to prevent infection.

The CDC has warned that low vaccination rates among those groups with the highest risk of mpox exposure could lead to a resurgence of the disease.

Dr. Richard Silvera, an assistant professor of infectious diseases at the Icahn School of Medicine at Mount Sinai in New York City, said the current mpox rates are far lower than they were in 2022, when there were more than 3,800 cases citywide, but that the numbers are growing rapidly.

“I am very concerned that there will be increased rates over the summer, particularly as we hit Pride Month,” Silvera said.

New York City has seen more than 200 cases this year — up from 46 at this time last year. It’s unclear what is causing the surge, but Silvera and other experts say one factor could be that some patients may not have received their second doses.

“Either their immunity is waning, or folks didn’t get complete vaccination,” he said. “And so now there’s been time for that virus to exploit those gaps in protection.”

The New York City Department of Health and Mental Hygiene released an advisory in early May, noting that of the 256 diagnoses between October 2023 and April 15, 73% were among unvaccinated people or people who had received only one dose.

“There’s a large overlap between people who belong to BIPOC communities, living with HIV, identifying as LGBTQ+,” said Preeti Pathela, executive director of the STI program at the agency.

“Our hope is that, through this kind of regular outreach which we have intensified in the last couple of months, knowing that coming into the summer is going to be a critical time to really double down, we’re just hoping that the messaging and the services get out to the communities that need it.”

Racist language associated with the former name of mpox helped spur the World Health Organization to rename it in 2022. Public health experts also were concerned that the former name might be discouraging people from being tested and vaccinated by contributing to the stigma surrounding the disease.

In reports last month, the CDC warned of a heightened global threat of a deadlier strain of mpox that is devastating the Democratic Republic of Congo, where the virus is endemic. That strain hasn’t been detected in the United States, but the agency and clinicians are on alert for possible cases in travelers from the country.

Infectious disease physician Dr. Anu Hazra said he and others in the field are closely watching that strain.

“The only way that we can truly think about eradicating mpox is bringing vaccines to everywhere in the world that’s impacted by the illness,” said Hazra, who sees patients at Howard Brown Health, which runs several clinics in the Chicago area focused on LGBTQ+ care.

HIV patients are at higher risk of contracting mpox, and are disproportionately Black and Hispanic. Racism, homophobia and barriers to care such as poverty and a lack of transportation complicate prevention and treatment efforts.

“When we think about, sort of, any communicable disease, we know that it tracks along racial and economic fault lines. We’ve seen that with HIV, we’ve seen that with COVID, we see that with certain STIs — we have certainly seen it with mpox,” Hazra said.

Silvera, of the Icahn School of Medicine, said clinicians and state health agencies also should consider the historic distrust of medicine among Black and Hispanic communities.

“It takes a lot of time. We’re undoing decades and centuries of work,” he said. “It’s a tough job. And so, we can do that person to person, but it’s also going to require larger efforts as well to undo these disparities.”

Along with distrust and vaccine skepticism, fear of being “outed” as gay is a major barrier in some Black communities, said Ryan Payne, a prevention specialist at the Alliance of AIDS Services-Carolina. The organization serves six counties in North Carolina.

“That is a full-blown truth. It’s very hard. Me and my co-workers are talking about that all the time,” Payne said.

At the end of April, the North Carolina Department of Health and Human Services found that 30 of the 51 cases over the previous six months were among Black people. But only 27% of patients vaccinated in the state this year were Black.

In Pennsylvania, there have been 64 reported mpox cases compared with two at this time last year, according to the CDC. The state’s health department said it will emphasize the importance of vaccinations throughout 2024, using an awareness campaign that will focus on reaching the at-risk populations through social media and dating apps.

Cory Haag, a registered nurse at the Central Outreach Wellness Center in Pittsburgh, said the best way to stem the spread is by addressing barriers, educating patients and quelling fears within the LGBTQ+ community the center serves.

Many patients travel for up to two hours to receive care at the center. It provides bus passes to patients so they can more easily return for a second vaccine dose.

“We’re just happy to be that safe space to catch them,” Haag said.

Stateline is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Stateline maintains editorial independence. Contact Editor Scott S. Greenberger for questions: info@stateline.org. Follow Stateline on Facebook and Twitter.

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Community health worker Ron Sanders, right, helps a patient at San Francisco’s Southeast Family Health Center, part of the Transitions Clinic Network that assists former inmates navigate health care after release. A new policy allows states to provide Medicaid health care coverage to inmates for specific services 30-90 days before their release. (Photo courtesy of Transitions Clinic Network)

A new policy that allows states to provide Medicaid health care coverage to incarcerated people at least a month prior to their release has drawn bipartisan interest and a slew of state applications.

Federal policy has long prohibited Medicaid spending on people who are incarcerated in jails or prisons, except for hospitalization. As a result, when people are released, they typically don’t have health insurance and many struggle to find health care providers and get needed treatment. In a population that is disproportionately likely to have chronic conditions such as heart disease and substance use disorders, that can be deadly.

Some states terminate residents’ Medicaid coverage when they’re incarcerated, while others just suspend it. Either approach can cause delays in seeking health care for people recently released from incarceration, with sometimes disastrous outcomes: A seminal 2007 study found that former prisoners in Washington state were 12 times more likely to die from all causes within two weeks of release, compared with the general population. The leading causes were drug overdoses, cardiovascular disease, homicide and suicide.

Because a disproportionate number of Black, Native and Hispanic people are incarcerated, lowering their death risk after release might reduce racial health disparities in the overall population.

In 2022, about 448,400 people were released from prison, according to the federal Bureau of Justice Statistics.

Under federal guidance released a year ago, states can connect prisoners with case managers 30-90 days before they are released to develop plans based on their health needs. The case manager can help the person make post-release appointments with primary care doctors, mental health counselors, substance use programs, and housing and food assistance.

States that want to extend Medicaid coverage to people in prison or jail must request a federal waiver to do so. At a minimum, participating states must provide case management, medication-assisted treatment for people with substance use disorders and a month’s supply of medication upon release, though states are free to do more.

The Health and Reentry Project, a policy analysis organization focused on health care for former prisoners, called the new policy “groundbreaking.”

“What these waivers enable states to do is build a bridge to access to health care — a bridge that starts before someone’s released and continues after their release,” said Vikki Wachino, executive director of the Health and Reentry Project and a former deputy director of the Centers for Medicare & Medicaid Services.

“It’s about starting the process before they leave prisons and jails, so that they can have stronger connections to health care providers and treatment providers after they leave prison and jail.”

As of last month, federal officials had approved waiver applications from four states — California, Massachusetts, Montana and Washington. Nearly 20 other states, including New Jersey, are waiting for approval, according to health research organization KFF.

Jack Rollins, director of federal policy at the National Association of Medicaid Directors, said states that want to participate are focusing on different incarcerated populations and medical conditions. Some would start with jails, others with state prisons or youth detention facilities. Some states would provide coverage to all inmates, others just to those with a substance use disorder.

Washington, for example, will cover people incarcerated in jails, prisons and youth correctional facilities beginning three months before they are released, an estimated 4,000 people each year. It will connect them to community health workers, bring in doctors and counselors for consultations, and provide lab services and X-rays.

Montana will limit its program to people in state prisons who have a substance use disorder or mental illness and will provide services beginning a month before release. It did not give an estimate of how many people would receive help each year.

California, where an estimated 200,000 people will be covered each year, also included community health workers in its plan. Dr. Shira Shavit, executive director of the Transitions Clinic Network, a California-based national network of clinics focused on formerly incarcerated people, said ex-prisoners are especially well suited for that role.

Shavit said her group consults them on where to locate new clinics and on strategies to reach recently released inmates, because the workers are adept at “knowing where people are when they come out into the community and finding them there.”

Research suggests that connecting recently released people with others who know what it’s like to be incarcerated makes it less likely that they will end up in the emergency room.

“They know how to connect with people, and people trust them, and will follow them to come to clinic and feel comfortable coming,” Shavit said.

Alfonso Apu, director of behavioral health services at Community Medical Centers Inc., a California network of neighborhood health centers that serves patients in San Joaquin, Solano and Yolo counties, said it’s easy to “lose” people once they are released.

“The complexity of these patients is so intense that they are going to need three, four, five hours of encounters with primary care every month, at least,” Apu said.

“Imagine if we had three months to prepare,” he said. “Having a plan of action and even having appointments already scheduled for their needs — it’s going to be game changing.”

Dr. Evan Ashkin is a physician who founded the Formerly Incarcerated Transition Program at the University of North Carolina, a network of community health centers that works with local health departments, clinics and community health workers to connect former inmates with health care. He agreed that employing community health workers who share the experience of previous incarceration is essential.

“I’m hoping we’ll be able to expand this workforce,” Ashkin said. “In our state, North Carolina, there’s not a lot of folks focusing on access to health care for people post-release.”

North Carolina is awaiting word on its application.

Ashkin added that “racial equity issues are really important.”

“We have to have our eyes wide open on the type of services we provide, that they are set up to bring in the communities most impacted,” he said.

Editor’s note: This story has been updated to more accurately describe the Health and Reentry Project.

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A patient and volunteer clinician are pictured at a COVID-19 vaccine event in April 2021 at the Dearborn, Mich., clinic run by the Arab Community Center for Economic and Social Services, a wellness, community service and education nonprofit. Experts and advocates have long advocated for a different category in official data for people from the Middle East and North Africa. Jacob Ermete/Courtesy of ACCESS

Before the successful, healthy birth of her son, recalls Germine Awad — an Egyptian American who is a psychologist at the University of Michigan — clinicians told her that her hormone levels were too high and that her pregnancy was in danger. “They don’t know us,” her mother reassured her.

Iyman Hamad, a Palestinian American public health graduate student at Wayne State University in Detroit, had to search online to figure out which race or ethnicity box she should check at the doctor’s office and on school forms.

And Itedal Shalabi, who runs an Arab American family services center in the Chicago area and is also Palestinian, said misinformation and hesitancy about COVID-19 vaccines were rampant in her community. Because Arab Americans were considered to be white in the absence of a category for them, county funding for outreach in minority communities was delayed, probably causing avoidable deaths, she said.

“In that time, we had so many Arab Americans die, especially elderly,” she said. “By the time we got the funding, we had so much work to do to catch up, while other [minority] communities were taking advantage of the shot.”

For decades, U.S. residents with heritage from the Middle East and North Africa, known internationally as the MENA region, have been classified by the government as white. The grouping masked differences in income, health, housing and other important markers. And when public health officials lack data on COVID-19 deaths or vaccine uptake in the MENA community, for example, it’s difficult to distribute dollars and other public resources effectively.

“The lack of a dedicated identifier makes it hard to isolate data,” said epidemiologist Nadia Abuelezam, an associate professor at the Boston College Connell School of Nursing and the daughter of Palestinian refugees. “Systemically, structurally, we were ignored, or our needs were ignored.”

Last month, the federal Office of Management and Budget approved revisions to race and ethnicity data collection across federal agencies, including the addition of a new MENA category to the census. They are the first race and ethnic category changes since 1997. Along with a combined race/ethnicity category, the changes include a combined Hispanic or Latino checkbox and removal of phrases that can be considered pejorative, including “Negro” and “Far East.” Federal officials have said these revisions will yield more accurate counts and use language “respectful of how people refer to themselves.”

The new federal classification of MENA people is geographical and includes people from Arabic-speaking groups, such as Lebanese, Algerians, Egyptians, Palestinians and Syrians, as well as people from non-Arabic-speaking groups, such as Iranians and Israelis. It also includes ethnic groups who live in multiple countries, such as Assyrian, Kurdish and Chaldean people.

The updates will appear on the next census in 2030, but by next year, federal agencies must submit detailed plans on how they will incorporate the new requirements.

Apart from independent studies by academic and nonprofit researchers, little is known about the health of Middle Eastern and North African people in the U.S. Experts and advocates hope the census change will spur local and state health agencies to update their own data collection methods to shed light on health inequities and needs.

“There’s so many of us here, yet we know so little,” said Hamad, who interns at the Oakland County, Michigan, health department’s data division. “There needs to be change.”

Filling in gaps

Abuelezam, who studies maternal and infant health outcomes among MENA people in Massachusetts, is among a handful of researchers in the U.S. who are trying to fill in gaps in MENA health data.

Her research on Massachusetts mothers has found, for example, that Black Arab mothers had higher odds of preterm birth and low birthweight than Arab mothers classified as white, while Arab mothers were more likely to suffer gestational diabetes than white mothers.

One study found that from the beginning of the pandemic through July 2021, about 17% of Arab Americans in Michigan tested positive for COVID-19 compared with 11% of Hispanic people, 9.8% of Black people and 7.5% of white people.

Similarly, researchers who study aging and Alzheimer’s and related dementias found that confusion and memory issues, which can be early symptoms of the diseases, were found among 17% of MENA immigrants, compared with 9.6% of U.S.-born white people.

The change in categories only applies to federal agencies, not state governments, said Rima Meroudeh, director of the National Network for Arab American Communities. However, the official forms used by states, health agencies and school systems typically mirror the categories used by the census, and the change provides “something much more concrete as we advocate at the state level because they want interoperability between state and federal data,” she said.

Awad, the University of Michigan psychologist, studies mental health and the influence of discrimination in the MENA community. She said the change will help her illuminate social determinants of health, such as housing and environment, income, access to resources, health care and transportation, as well as trauma experiences. Awad and other researchers also are interested in exploring the prevalence of health conditions such as asthma and cardiovascular disease in MENA communities.

“A group of us have been working for years advocating for this box,” Awad said. It’s “been long overdue, and finally, we are going to be able to collect data to truly delve into some unanswered questions. We know there are disparities, but we don’t actually truly understand the extent because there hasn’t been systematic data collection.”

The health data that schools collect also is skewed, said Matt Jaber Stiffler, who co-founded the Center for Arab Narratives, part of the Arab Community Center for Economic and Social Services, or ACCESS. For example, Stiffler said, Arab children are the majority of K-12 students in Dearborn, Michigan, but state data identifies them as white.

Inclusion would “give a better picture of who these communities are and what their needs might be,” Stiffler said.

Population counts

So far, federal population counts of MENA communities have been estimates. For the first time, the 2020 census offered a write-in option so respondents could mark their race and ethnicity as “white” but write in their ancestry. About 3.5 million people wrote in MENA countries of origin, with Lebanese, Iranians and Egyptians making up nearly half of them.

California, Michigan and New York had the largest MENA populations, with more than 300,000 residents combined. Those states were trailed by Texas, Florida, Illinois and New Jersey. Prior to the 2020 write-ins, the American Community Survey, an ongoing survey by the U.S. Census Bureau, provided limited estimates.

According to the Migration Policy Institute, a think tank that analyzes immigration policy, the 1920 census reported around 50,000 people from the MENA region. In the years since, a steady flow of Palestinians, Egyptians, Iraqis, Syrians and others have immigrated to the U.S., some after the 1948 Arab-Israeli War, and many more after the U.S. loosened its restrictive immigration policies in 1965. By 1980, the MENA population in the U.S. had risen to about 224,000.

Last August, Illinois became the first state to enact a law mandating all state agencies that collect race and ethnicity data include a MENA category. Lawmakers in California and Michigan are considering similar bills.

“We should incorporate this at all levels, whether in our health system data or educational systems, like on university levels,” said Sarah Abboud, an assistant professor at the University of Illinois Chicago who studies health outcomes among Arab immigrants.

Some critics argue that the census should move away from categorizing people by race, instead of adding new racial categories. They point to the Human Genome Project, which found that humans share 99.9% of their DNA. Race, some argue, is a social construct, a relic of the 18th century.

But public health experts have demonstrated that racism affects people’s health, and Abboud said that Arab Americans experience worse health outcomes because of it. Additionally, immigrants displaced by war, such as Palestinian and Syrian refugees and their children, may have unique stressors around trauma.

Shalabi, of Arab American Family Services in Chicago, said inclusion of MENA in data is long overdue.

“We’re so excited because it’s about time that our community was identified, was visible, and in a way that really works toward their betterment of health and … being part of the American fabric,” she said.

Stateline is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Stateline maintains editorial independence. Contact Editor Scott S. Greenberger for questions: info@stateline.org. Follow Stateline on Facebook and Twitter.

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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 displaying 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.”

Stateline is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Stateline maintains editorial independence. Contact Editor Scott S. Greenberger for questions: info@stateline.org. Follow Stateline on Facebook and Twitter.

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Lab staff prepare small petri dishes, each holding several 1-7 day old embryos, for cells to be extracted from each embryo to test for viability at the Aspire Houston Fertility Institute in vitro fertilization lab Tuesday, Feb. 27, 2024, in Houston. Women over 35 and those facing serious diseases like cancer, lupus and sickle cell are among the most likely to turn to IVF to build the families they desperately want. But in Alabama, they are among those whose dreams are in limbo after three of the state's largest clinics paused IVF services. (AP Photo/Michael Wyke)

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.”

Stateline is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Stateline maintains editorial independence. Contact Editor Scott S. Greenberger for questions: info@stateline.org. Follow Stateline on Facebook and Twitter.

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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.”

Stateline is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Stateline maintains editorial independence. Contact Editor Scott S. Greenberger for questions: info@stateline.org. Follow Stateline on Facebook and Twitter.

The post New way for states to cover pricey gene therapies will start with sickle cell disease appeared first on New Jersey Monitor.

DEL RIO, TEXAS - SEPTEMBER 21: A Haitian mother holds her newborn inside a tent in the large migrant camp near an international bridge at the U.S.-Mexico border on September 21, 2021 in Del Rio, Texas. Many of the estimated 14,000 immigrants in the camp have been living in makeshift dwellings made of tree branches and carrizo cane. U.S. immigration authorities have begun deporting planeloads of migrants directly to Haiti while others have crossed the Rio Grande back to Mexico. (Photo by John Moore/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.

Stateline is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Stateline maintains editorial independence. Contact Editor Scott S. Greenberger for questions: info@stateline.org. Follow Stateline on Facebook and Twitter.

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Children's Defense Fund program director Graciela Camarena assists Lucia Salazar with filling out Medicaid and SNAP application forms for her family in Pharr, Texas, Monday, Nov. 13, 2023. As the state reviews Texans' eligibility, some 1 million people have already lost Medicaid and organizations like the one Graciela works for assist people in applying again. (AP Photo/Michael Gonzalez)

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.”

Stateline is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Stateline maintains editorial independence. Contact Editor Scott S. Greenberger for questions: info@stateline.org. Follow Stateline on Facebook and Twitter.

The post Grassroots groups help Medicaid recipients regain lost coverage appeared first on New Jersey Monitor.

For help, call 800-799-7233, or text “START” to 88788 for the 24/7 National Domestic Violence Hotline.

Today, Andreae Lloyd’s family will mark the second anniversary of her death.

Just after midnight on Dec. 7, 2021, police say, Xavier Johnson, Lloyd’s boyfriend, knocked on the door of the Miami-area group home she managed, where she was working an overnight shift alone. A surveillance camera captured what police say happened next: Johnson beat her, dragged her into his white Honda Civic and drove away.

Police say he confessed to the crime. His trial begins in January.

Intimate partner violence and domestic violence killings are a serious public health problem, according to the federal Centers for Disease Control and Prevention. But police can help prevent such killings, experts say, by using a questionnaire more states are seeking to make mandatory or more widely used during domestic violence calls.

In the wake of the well-publicized case of Gabby Petito, killed by her fiancé in 2021, Utah this spring enacted a law that requires police to conduct so-called lethality assessments at domestic violence scenes.

The model lethality assessment practice, developed by the Maryland Network Against Domestic Violence, starts with an 11-question survey to determine whether a person’s life is at risk. The officer or first responder informs the victim of their screening score on the assessment and then calls a local domestic violence service hotline, connecting the hotline with the victim, if the victim is willing, to develop an immediate safety plan that might include emergency shelter.

Some Utah police already had been using lethality assessments on domestic violence calls. But since the state law went into effect, Utah has seen a sharp increase in shelter demand and referrals.

Alfreda Lyons, Lloyd’s godmother, is a domestic violence survivor herself. Her goddaughter called her an hour before she was abducted, to tell her she planned to end her relationship with Johnson. Two years later, Lyons wonders whether the death of the woman she considered a daughter could have been prevented.

“I’m a survivor because I got out. I’m a victim because my daughter was murdered,” she said. “There’s so many things I believe that you can garner from that assessment … it could be key to survival.”

Florida state Sen. Lauren Book, a Democrat, recently introduced a bill that would mandate lethality assessments in her state.

Screening tool

More than a third of the 4,970 female murder victims in 2021 were killed by an intimate partner, according to the latest statistics available from the U.S. Department of Justice. Women are five times more likely to be murdered by an intimate partner than men are, the agency said. Black and Indigenous women and rural women, according to some studies, are killed at disproportionately high rates.

More than 84% of American Indian and Alaska Native women experience violence in their lifetime, according to the Justice Department. Intimate partners are the suspects in 38% of the homicides of these women, according to a CDC analysis of data from 34 states.

The Maryland Network Against Domestic Violence first developed the model Lethality Assessment Program in 2003, with financial support from the federal Office on Violence Against Women. It is based on the Danger Assessment, a landmark screening tool developed by Johns Hopkins School of Nursing professor Jacquelyn Campbell in 1985.

The network collaborates with state and local agencies across the country to train police and domestic violence service agencies, such as shelters, to conduct the assessments.

The questions are designed to tease out facts that significantly increase the risk of homicide, such as whether the victim suffered strangulation, if their partner owns a gun or if the victim has tried to separate from their partner or leave the relationship. According to the Maryland network’s annual report, 1 in 3 domestic violence-related homicide victims in 2021 were killed while trying to end a relationship or after leaving it.

States and jurisdictions may use their own programs or different forms of lethality risk assessments, and many law enforcement agencies have been using such tools for years. The Maryland network says Connecticut, Maryland, North Carolina, Oklahoma, Pennsylvania, Virginia and Wisconsin have taken statewide approaches to implement the assessments, meaning state coordinators may require or encourage law enforcement jurisdictions to use the assessment and support them with training and resources.

Campbell and other experts say police department policies, initiated by department leaders, can be more effective than statewide mandates.

Darrell Holly, an administrator at the Maryland network, said, “When you have the buy-in from the top down, we see a more successful implementation.”

Even in states that have a law, implementation can be spotty. In a 2022 annual report released in January, the Oklahoma Domestic Violence Fatality Review Board included a recommendation to “increase law enforcement agencies’ compliance with state statute” and implement a training plan.

In North Carolina, Democratic Attorney General Josh Stein has been behind the push to roll out statewide use of lethality assessments. Stein and U.S. Rep. Deborah Ross, also a Democrat, recently held a listening session in their state, where domestic violence-related homicides have risen 25% so far in 2023 compared with 2022, Stein’s office reported in late October.

Currently, nine North Carolina jurisdictions are using the lethality assessment program, according to the attorney general’s office.

“Ultimately, it’s going to save lives,” said Skye Sullivan, director of the Family Justice Center of Alamance County, which is between Greensboro and Durham. “These numbers have steadily been going up. The biggest issue you have in trying to prevent homicide is that a lot of agencies are very siloed. A lot of systems are underfunded, and they’re understaffed.”

Services for victims

Another goal of lethality assessments is to connect victims with services such as temporary housing, mental health care or support groups that are language or culturally sensitive.

“The last place often that survivors make contact [with] are domestic violence service providers,” so being able to link them to service providers during a call is key, said Nisha Williams, legal director for the North Carolina Coalition Against Domestic Violence.

After Pitt County, North Carolina, implemented the assessment in 2012, the county saw an 82% increase in victims who received domestic violence services, according to chief sheriff’s deputy John Guard.

The National Center on Violence Against Women in the Black Community, also known as Ujima, is promoting the use of risk assessments in states where racial domestic violence disparities are widest.

Training police to use them in culturally sensitive ways is critical, said Gretta Gardner, Ujima’s chief legal officer.

For example, many Black domestic violence victims may fear coming forward because they, or their communities, have experienced discriminatory treatment by police officers and have little faith that law enforcement will protect them, she said.

In Florida, Lloyd’s family plans to send pink balloons into the sky to remember the young woman, who would have turned 30 next week.

On her desk, Lyons keeps a light-up crystal block with a laser-engraved photo of her and her goddaughter. She looks at it as she works on her dissertation about domestic violence for a doctorate in criminal justice.

“If you look at a lot of our pictures, she’s like Velcro, she’s so close to me. She’s my shadow,” Lyons said. “It saddens me that a gentle soul like Andreae had to be taken with such force and such violence by someone she loved.”

Stateline is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Stateline maintains editorial independence. Contact Editor Scott S. Greenberger for questions: info@stateline.org. Follow Stateline on Facebook and Twitter.

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A patient seeking an abortion at Hope Medical Group for Women in Shreveport, La. holds up her ultrasound photo Wednesday, July 6, 2022 showing that she is nine weeks and four days pregnant. She said she already has two children, "and it's just not a good time for us." Nearly two weeks after the 1973 Roe vs Wade decision was overturned, the abortion clinic is still providing abortions. But the Hope Medical Group for Women faces a looming court case on Friday that could spell an end to that. (AP Photo/Ted Jackson)

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.

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.”

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.”

Stateline is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Stateline maintains editorial independence. Contact Editor Scott S. Greenberger for questions: info@stateline.org. Follow Stateline on Facebook and Twitter.

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