Abortion

Patient Mistrust and Poor Access Hamper Federal Efforts to Overhaul Family Planning

JACKSON, Miss. — Two years ago, after an emergency cesarean section at a Mississippi hospital, Sherika Trader was denied a tubal ligation. Trader, now 33, was told that to have her tubes tied, she had to have a second child or a husband’s permission, even though she wasn’t married.

Jasymin Shepherd had heavy menstrual cycles because of a birth control pill prescribed after the birth of her son 13 years ago. The symptoms continued even after she stopped taking the medication. Last year, a doctor in Jackson responded by offering Shepherd, 33, a hysterectomy, which she didn’t want.

The experiences left the women feeling as though providers acted like “robots,” or, worse, they felt stereotyped. Black women already face major barriers to accessing health care, including provider shortages and racial bias rooted in the medical system.

But with contraceptive care, which deals with deeply personal patient preferences, they must also contend with providers who dismiss their concerns. Decisions about whether — or when — to have a baby and how to prevent pregnancy are not as standardized as care for other conditions. Yet providers hand out prescriptions or recommendations while disregarding a patient’s specific circumstances, Shepherd said.

Late last year, the White House made new recommendations for a federal program that provides funding for free contraceptives, wellness exams, and certain cancer screenings. Health officials want to regain the trust of patients like Trader and Shepherd, who feel as though their doctors don’t always listen to them. The goal of the Title X program, which distributes grants to states and other groups for family planning, is to let patients dictate the care they want, said Jessica Marcella, who is the deputy assistant secretary for population affairs at the U.S. Department of Health and Human Services and oversees the Title X program.

“Our belief, and that of the family planning field, is that it is essential that you respect the interests, needs, and values of a client,” she said. Providers shouldn’t force patients to take a birth control method because it’s more effective, she said, or deny them a particular method because they think a patient might want more kids.

“What we don’t want is a provider to create trauma or do unintentional harm,” Marcella said.

In Mississippi, efforts to implement that approach have started with a change in who gets to administer the Title X funds, taking that responsibility from the state and giving it to a four-year-old Jackson-based nonprofit named Converge. The Biden administration’s decision this year to give Converge the $4.5 million grant marks the first time in four decades that Mississippi’s health department hasn’t won the federal family-planning grant.

Converge doesn’t offer family planning services. Instead, the group provides funding to a network of clinics statewide, organizes provider training, helps clinics navigate technology challenges, and keeps them stocked with supplies. For example, when a provider was having trouble printing out a survey that patients took about their contraception preferences, Converge co-founder and co-director Jamie Bardwell shipped the clinic a wireless printer.

Jamie Bardwell (left) and Danielle Lampton co-founded Converge, a nonprofit that administers federal family-planning funds in Mississippi through a grant it won earlier this year.(Nico Hopkins)

But across the South, the attempt to change the culture of family planning care faces old and new obstacles. Some are deeply rooted in the medical system, such as the bias long faced by Black women and other women of color. In addition, contraception care is limited in the conservative South, and the Supreme Court’s June decision to overturn Roe v. Wade has led to the curtailing of abortion access across much of the region.

Black women often feel disrespected and dismissed by their providers, said Kelsey Holt, an associate professor of family and community medicine at the University of California-San Francisco. She co-authored a 2022 study in the journal Contraception in which dozens of Black women in Mississippi were interviewed about their experiences getting contraceptives.

Women told researchers that they struggled to get appointments, faced long wait times, and had to put up with condescending behavior. Many of the women said providers didn’t inform them about alternatives to the contraceptive Depo-Provera, a progestin shot administered once every three months, despite the known side effects and the availability of other, more appropriate options.

Trying to undo decades of such damage — and overhaul how providers deliver family planning care — became even more difficult after the Supreme Court decision and the closure of abortion clinics across the South. Suddenly, women in Mississippi, Alabama, and about a dozen other states could no longer get abortions.

“A major service has been cut off,” said Usha Ranji, associate director for women’s health policy at KFF. Title X funds cannot be used — and have never been used — to pay for abortions. But, she said, clinics can no longer present abortion as an option, hampering their ability to provide comprehensive counseling, a key requirement of the Title X program.

Many Mississippians can’t afford to travel across state lines to terminate an unwanted pregnancy. In 2020, 84% of Title X clients in the U.S. had incomes at or below 200% of the federal poverty level, and 39% were uninsured. Even women in Mississippi with the means to travel will face hurdles in nearby states, like Georgia and Florida, where abortion is not fully banned but access has been scaled back.

Even before the Supreme Court decision, access to family planning care in Mississippi came with hurdles and judgment.

In 2017, when Mia, who didn’t want her last name used for fear of legal and social repercussions, became pregnant for the second time, she called the local health department in Hattiesburg for advice on obtaining an abortion. She had a daughter and wasn’t financially or mentally prepared to have another child. The health department contact sent Mia to a faith-based, anti-abortion center.

“I felt judged,” Mia said about the call. Eventually, she terminated the pregnancy in Jackson, about 90 miles away, at the state’s sole abortion clinic, which closed in July. “Ultimately, I did what was best for me,” said Mia, who went on to have a son several years after the abortion.

The loss of abortion care in Mississippi puts more pressure on family planning providers to win the trust of their patients, said Danielle Lampton, who also co-founded Converge. Patient-centered care is the “bedrock of what we do,” Lampton said.

Both Trader and Shepherd serve on Converge’s patient experience council and receive occasional stipends for providing their perspectives to the nonprofit.

Providers shouldn’t force or pressure low-income patients to use long-term contraception, such as an intrauterine device, to safeguard against pregnancy, said Dr. Christine Dehlendorf, a family physician and researcher at UCSF, who is advising Converge.

Wyconda Thomas, a family nurse practitioner, opened a clinic four years ago in Gunnison, Mississippi, a town of only a few hundred people. Thomas lets patients’ life circumstances, their history, and their needs determine what type of contraception she prescribes.(Haleigh Brooke Thomas McGee)

Pressuring Black women to use IUDs, implants, and other long-term contraception is reminiscent of a history in which Black women were sterilized against their consent, she said. Even today, studies show that providers are more likely to pressure women of color to limit the size of their families and recommend IUDs to them. These women also have a harder time getting a provider to remove the devices and getting insurance to cover the removal cost, Dehlendorf said.

Too often, Wyconda Thomas, a family nurse practitioner near the Arkansas border, meets patients who are skeptical of birth control because of a bad experience. Many of her patients continued Depo-Provera shots even after they gained an unsafe amount of weight — a known side effect — because they weren’t offered other options.

Even if patients come in for another reason, Thomas talks to them about family planning “every chance I get,” she said. Four years ago, Thomas opened the Healthy Living Family Medical Center in Gunnison, a 300-person town that is 80% Black. The clinic receives Title X funds through Converge. Still, Thomas doesn’t force contraception on patients — she respects their decision to forgo a pill, patch, or implant.

But Title X funds help Thomas stock a variety of contraception methods so patients don’t have to worry about driving to a separate pharmacy.

“My job for them is to get them to understand that there are more methods and there’s no method at all,” Thomas said. “And that’s a whole visit by itself.”

Renuka Rayasam:
rrayasam@kff.org,
@renurayasam

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Environmental Health

In Jackson, the Water Is Back, but the Crisis Remains

JACKSON, Miss. — In mid-September, Howard Sanders bumped down pothole-ridden streets in a white Cadillac weighed down with water bottles on his way to a home in Ward 3, a neglected neighborhood that he called “a war zone.”

Sanders, director of marketing and outreach for Central Mississippi Health Services, was then greeted at the door by Johnnie Jones. Since Jones’ hip surgery about a month ago, the 74-year-old had used a walker to get around and hadn’t been able to get to any of the city’s water distribution sites.

Jackson’s routine water woes became so dire in late August that President Joe Biden declared a state of emergency: Flooding and water treatment facility problems had shut down the majority-Black city’s water supply. Although water pressure returned and a boil-water advisory was lifted in mid-September, the problems aren’t over.

Bottled water is still a way of life. The city’s roughly 150,000 residents must stay alert — making sure they don’t rinse their toothbrushes with tap water, keeping their mouths closed while they shower, rethinking cooking plans, or budgeting for gas so they can drive around looking for water. Many residents purchase bottled water on top of paying water bills, meaning less money for everything else. For Jackson’s poorest and oldest residents, who can’t leave their homes or lift water cases, avoiding dubious water becomes just that much harder.

“We are shellshocked, we’re traumatized,” Sanders said.

Jackson’s water woes are a manifestation of a deeper health crisis in Mississippi, whose residents have pervasive chronic diseases. It is the state with the lowest life expectancy and the highest rate of infant mortality.

“The water is a window into that neglect that many people have experienced for much of their lives,” said Richard Mizelle Jr., a historian of medicine at the University of Houston. “Using bottled water for the rest of your life is not sustainable.”

But in Jackson an alternative doesn’t exist, said Dr. Robert Smith. He founded Central Mississippi Health Services in 1963 as an outgrowth of his work on civil rights, and the organization now operates four free clinics in the Jackson area. He often sees patients with multiple health conditions such as diabetes, hypertension, or heart problems. And unsafe water could lead to death for people who do their dialysis at home, immunocompromised individuals, or babies who drink formula, said Smith.

Dr. Robert Smith founded Central Mississippi Health Services in 1963 as an outgrowth of his work on civil rights.(Renuka Rayasam / KHN)

Residents filed a lawsuit this month against the city and private engineering firms responsible for the city’s water system, claiming they had experienced a host of health problems — dehydration, malnutrition, lead poisoning, E. coli exposure, hair loss, skin rashes, and digestive issues — as a result of contaminated water. The lawsuit alleges that Jackson’s water has elevated lead levels, a finding confirmed by the Mississippi State Department of Health.

While Jackson’s current water situation is extreme, many communities of color, low-income communities, and those with a large share of non-native English speakers also have unsafe water, said Erik Olson, senior strategic director for health and food at the Natural Resources Defense Council. These communities are more frequently subjected to Safe Drinking Water Act violations, according to a study by the nonprofit advocacy group. And it takes longer for those communities to come back into compliance with the law, Olson said.

The federal infrastructure bill passed last year includes $50 billion to improve the country’s drinking water and wastewater systems. Although Mississippi is set to receive $429 million of that funding over five years, Jackson must wait — and fight — for its share.

And communities often spend years with lingering illness and trauma. Five years after the start of the water crisis in Flint, Michigan, about 20% of the city’s adult residents had clinical depression, and nearly a quarter had post-traumatic stress disorder, according to a recent paper published in JAMA.

Jones, like many locals, hasn’t trusted Jackson’s water in decades. That distrust — and the constant vigilance, extra expenses, and hassle — add a layer of psychological strain.

“It is very stressful,” Jones said.

For the city’s poorest communities, the water crisis sits on top of existing stressors, including crime and unstable housing, said Dr. Obie McNair, chief operating officer of Central Mississippi Health Services. “It’s additive.”

Over time, that effort and adjustment take a toll, said Mauda Monger, chief operating officer at My Brother’s Keeper, a community health equity nonprofit in Jackson. Chronic stress and the inability to access care can exacerbate chronic illnesses and lead to preterm births, all of which are prevalent in Jackson. “Bad health outcomes don’t happen in a short period of time,” she said.

For Jackson’s health clinics, the water crisis has reshaped their role. To prevent health complications that can come from drinking or bathing in dirty water, they have been supplying the city’s most needy with clean water.

“We want to be a part of the solution,” McNair said.

Community health centers in the state have a long history of filling gaps in services for Mississippi’s poorest residents, said Terrence Shirley, CEO of the Community Health Center Association of Mississippi. “Back in the day, there were times when community health centers would actually go out and dig wells for their patients.”

Central Mississippi Health Services had been holding water giveaways for residents about two times a month since February 2021, when a winter storm left Jackson without water for weeks.

But in August, things got so bad again that Sanders implored listeners of a local radio show to call the center if they couldn’t get water. Many Jackson residents can’t make it to the city’s distribution sites because of work schedules, lack of transportation, or a physical impairment.

“Now, all of a sudden, I am the water man,” Sanders said.

Thelma Kinney Cornelius stores the water she gets from Howard Sanders of Central Mississippi Health Services in her garage.(Renuka Rayasam / KHN)

Thelma Kinney Cornelius, 72, first heard about Sanders’ water deliveries from his radio appearances. She hasn’t been able to drive since her treatment for intestinal cancer in 2021. She rarely cooks these days. But she made an exception a few Sundays ago, going through a case of bottled water to make a pot of rice and peas.

“It’s a lot of adjustment trying to get into that routine,” said Cornelius. “It’s hard.”

The day that Jackson’s boil-water advisory was lifted, Sanders was diagnosed with a hernia, probably from lifting heavy water cases, he said. Still, the following day, Sanders drove around the Virden Addition neighborhood with other volunteers, knocking on people’s doors and asking whether they needed water.

He said he has no plans to stop water deliveries as Jackson residents continue to deal with the long-term fallout from the summer’s crisis. Residents are still worried about lead or other harmful contaminants lurking in the water.

“It’s like a little Third World country over here,” Sanders said. “In all honesty, we will probably be on this for the next year.”

Renuka Rayasam:
rrayasam@kff.org,
@renurayasam

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