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This Northern Cheyenne Doula Was About To Start Getting Paid — Then Medicaid Cuts Hit

LAME DEER, Mont. — Misty Pipe had about an hour before her shift began at the post office. She used that time to check in on a new mom who lives a few miles outside this town at the heart of the Northern Cheyenne Indian Reservation.

A mom of seven, Pipe is a doula on the reservation who supports new and expectant parents. She does that work free, around her day job. That’s because in this town of about 2,000 people, the closest hospital that delivers babies is 100 miles away.

“Women need this help,” Pipe said.

Doulas ready parents for childbirth, support their deliveries, and can be a steady presence in a baby’s first months. Studies link their work with lower rates of costly birth and postpartum complications — especially in hard-to-reach places like Lame Deer.

But that help can be scarce. As Pipe put it: “Doula doesn’t pay the bills around here.”

Things were supposed to change this year. Montana was set to join at least 25 other states that reimburse doulas through their Medicaid programs to ease gaps in care. Montana lawmakers approved the payments last year, authorizing up to $1,600 per pregnancy. Pipe hoped that money would give her the chance to leave her post office job one day to help more parents.

But the state Department of Public Health and Human Services postponed adding doula services to its Medicaid program in late March, citing a budget shortfall driven in part by higher-than-expected Medicaid costs.

“DPHHS will not be moving forward with the implementation of doula services in the Montana Medicaid benefit package at this time,” department spokesperson Holly Matkin told KFF Health News.

The news caught Pipe by surprise — she hadn’t heard any updates in a while, but the state had finalized its licensing rules for doulas in January. Last year, she supported three people through their deliveries. She doesn’t have time for much more. That weighs on her. Nearly half the people on the Northern Cheyenne Indian Reservation live in poverty, and the people she helps usually can’t afford to pay a doula.

“I was looking forward to serving more people,” Pipe said. “Now that’s not going to happen anytime soon.”

Charlie Brereton, who heads the health department, told state lawmakers in March that the agency projected a $146.3 million shortfall in federal Medicaid funds for this year. Health officials predict another deficit next year as states feel the effects of Republicans’ massive tax-and-spending law, the One Big Beautiful Bill Act. Signed last year, that law is projected to reduce federal Medicaid spending by nearly $1 trillion over 10 years.

Matkin said it’s “unclear” whether the agency can authorize doula coverage this year. The deficit will lead the department to seek supplemental funding from state lawmakers. When an agency makes that kind of request for the first year of the state’s two-year budget cycle, Montana law requires it to create a plan to reduce its spending.

Around the country, optional Medicaid services — such as doula support, home health care, and dental work — are at risk of losing funding as states brace for federal Medicaid cuts to hit their bottom lines. Already, lawmakers in Idaho are considering their own reductions to Medicaid to balance the state’s budget. Missouri officials proposed cutting tens of millions of dollars in services for people with disabilities.

In Montana, doula services are unlikely to be the only Medicaid cutbacks announced. “All options are on the table,” Brereton told lawmakers in March.

Stephanie Morton, executive director of Healthy Mothers, Healthy Babies-The Montana Coalition, said more than half of Montana’s counties are designated as maternity care deserts.

“Budget cuts will continue to diminish the limited services families rely upon in these counties,” said Morton, whose nonprofit had advocated for doula Medicaid reimbursement. “This decision feels like the first of many rollbacks and cuts Montanans will face.”

Laboring Alone

At the check-in just outside town, Pipe handed a waking newborn to his mother and unwrapped a new swaddle for the child. This would have to be a quick visit — she was already late for work.

The mother, Britney WolfVoice, held her newborn son as her three young daughters stood close by. Pipe has been with WolfVoice and her husband for the birth of their newborn son and youngest daughter.

She helped them create delivery plans. For the birth of WolfVoice’s youngest daughter a few years ago, Pipe brought cedar oil, a sacred plant used for prayer, and calmed WolfVoice through her contractions. For the recent birth of her son, when hospital backlogs delayed WolfVoice’s induction, Pipe encouraged her to advocate for an earlier appointment by routinely calling the hospital. Doctors had recommended the procedure to avoid complications.

“Misty is one person who I can count on to be my voice,” WolfVoice said.

If someone needs a ride to a doctor’s appointment, Pipe takes time off work to drive them. If a client goes into labor when Pipe’s at the post office, she texts two other free doulas she knows of on the reservation to see if they have time to help until her shift ends. But they also have day jobs.

Pipe herself has ridden that 100-mile stretch between home and the hospital in labor and in the back of an ambulance. Twice, she gave birth in emergency rooms along the way. In one of her pregnancies, she miscarried at home and couldn’t get a doctor appointment for days.

The long distance to receive care often meant her husband had to stay behind to tend to their other children at home.

“I labored alone so many times,” Pipe said. “I just want to make sure no one’s alone.”

Rural maternity care deserts are a national problem, especially as labor and delivery units continue to shutter. In many tribal communities, a lack of care coincides with long-standing inequities caused by centuries of systematic discrimination.

Predominantly Indigenous communities face the longest distances to obstetric facilities compared with all other racial and ethnic groups, according to a 2024 report from the March of Dimes. That’s part of the reason Indigenous women are far more likely to get sick from pregnancy and at least twice as likely to die as white women.

Indigenous patients are supposed to be guaranteed access to health care through the federal Indian Health Service. But the chronically underfunded agency has severe gaps. A small fraction of its hospitals and clinics offer labor and delivery. As of 2024, only seven states had either an IHS or tribal birth facility, the agency reported. To help fill in those shortfalls, Medicaid is the main source of health coverage for many Native Americans, according to KFF.

Even where care exists, Native women can experience a distrust of health systems, according to Pipe and other health workers. The U.S. government has a long history of removing children from tribal homes and forcing Native American women to undergo sterilization.

Emily Haozous of the Pacific Institute for Research and Evaluation’s Southwest center has studied premature deaths among Native Americans. A member of the Fort Sill-Chiricahua-Warm Springs-Apache Tribe, Haozous said data on maternal health disparities in pregnancy and postpartum often misses a key point.

“It’s not that women are just not taking care of themselves,” Haozous said. “The system is set up for them to not have access to care.”

On top of funding cuts, the One Big Beautiful Bill Act will add more frequent eligibility checks and work requirements to access Medicaid. Those changes, when they take effect later this year and next, will lead an estimated 5.3 million people to lose their coverage by 2034.

Native Americans are exempt from some of the law’s new rules, such as the work requirements. Even so, tribal patients can get tangled in administrative hurdles. That includes struggling to enroll in the first place or to prove their tribal status. A full-time college student, WolfVoice said that when she got pregnant, it took about six months to enroll in the state’s Medicaid program.

Despite Montana’s long struggle with a backlogged Medicaid system, state officials aim to implement work requirements this summer, well before the federal deadline.

Moccasins on the Ground

As Pipe pulled into her driveway one day after a full shift at the post office, her kids ran to her. She was also greeted by Felicia Blindman, a 63-year-old public health nurse who used to work for the tribe. The two sat in lawn chairs into the night and brainstormed ways to connect more women to services — such as free prenatal classes.

Pipe’s four youngest children played around them. Her 14-year-old daughter is already certified as an Indigenous doula. Her 8-year-old daughter has begun helping Pipe pick up prescriptions for moms without a car who live out of town. Pipe hopes one day they could do that work full-time, if they want to.

Because of the lost Medicaid payment, Pipe said, she will continue to balance her job with her birth work, even if it means persuading more people to become doulas, such as family and respected community members, to cover more ground.

“It’s not going to stop me from training more birth workers, more young people, more aunties,” Pipe said. “For now, I guess it’s more about grassroots, moccasins on the ground, helping each other.”

She said that means telling pregnant people who walk into the post office she’s there to help if they need support. At least, as long as she’s not at her day job.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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These Women Had Their Breasts Removed To Thwart Cancer. Then Came the Pain.

Three weeks after Sophia Bassan’s mastectomy, she felt a stabbing pain beneath her right armpit. In the following months, painful shocks radiated through her chest and back. Her body became so sensitive that at times she couldn’t wear a shirt or lift a fork to her mouth.

Bassan slept sitting up because it hurt to lie down, and she would flinch at the slightest touch.

“I remember thinking I was losing my mind,” said Bassan, 43. “One time I was in so much pain that I had to take off my top, and then my cat’s tail brushed against my back. I screamed.”

Mastectomies are lifesaving surgeries that remove a patient’s breasts to treat breast cancer, which affects 1 in 8 American women over their lifetimes, according to the American Cancer Society. Some women also undergo mastectomies as a preventive measure after a genetic test shows they have an increased risk for breast cancer.

In the months following surgery, many women are afflicted by post-mastectomy pain syndrome, or PMPS, which spans from uncomfortable to disabling and can last years.

Yet PMPS is inconsistently diagnosed and treated, leaving women like Bassan in agony as they hunt for relief and struggle to find doctors who take their pain seriously, according to a KFF Health News review of peer-reviewed research studies and interviews with pain specialists, surgeons, patients, and patient advocates.

Another problem is that PMPS is poorly defined, which contributes to the wide range of estimates for how common it is, reaching as high as more than 50% of mastectomy patients, according to studies. Even the low-end estimates, around 10%, would amount to tens of thousands of women.

PMPS care could improve if lawmakers pass the Advancing Women’s Health Coverage Act, which was introduced in October to ensure insurance coverage after breast cancer treatment, including preventive mastectomies. The bill, which does not mention PMPS by name, covers complications including chronic pain. More research would help, but pain research has long been fractured across several medical specialties and, more recently, has been undermined by the administration of President Donald Trump, who last year proposed deep cuts to research funding at the National Institutes of Health. After Congress rejected those cuts earlier this year, the White House slowed the release of NIH grant money, hindering ongoing and future scientific research.

“I’ve known women who’ve had chronic pain — itching, burning, stabbing pain — for years after mastectomies,” said Kathy Steligo, an author of multiple books on breast cancer who said she has spoken with hundreds of patients. “Of all the problems, that is probably the one least talked about by surgeons.”

Four mastectomy patients interviewed by KFF Health News told similar stories. In separate interviews, patients said their presurgery consultations did not raise the possibility of post-mastectomy pain syndrome, although each said they had signed forms that may have disclosed the chance of this complication. All said that they felt blindsided by the chronic pain, and some said their doctors dismissed their symptoms.

“Women don’t know about this, and when they have complications, the doctors act like it is so rare, like they’re so baffled,” Bassan said. “But this is statistically predictable.”

Jennifer Drubin Clark, 42, struggled with pain after her mastectomy in 2018, and it worsened after reconstructive breast surgery in 2019.

But her surgeon seemed to focus only on the appearance of her breast implants, she said.

“I couldn’t play the piano. I wanted to blow-dry my hair, but I couldn’t hold my arm above my head for more than two seconds. I couldn’t hold my kids,” Clark said. “Everything made me cry.”

Pain Often Dismissed

Breast cancer survival rates have steadily increased since the 1980s thanks to improved cancer screening, genetic testing, better treatments, and a rise in mastectomy surgeries.

Post-mastectomy pain syndrome is a consequence of that success, according to recent research papers from anesthesiologists at Baylor University in Texas and surgeons in Chicago and New York. Both papers called for an increased focus on PMPS so that breast cancer patients can not only live longer but live well.

“In the past, when concern was predominantly on patient survival, this pain was often considered acceptable,” plastic surgeons Jonathan Bank and Maureen Beederman wrote in a 2021 paper, adding that mastectomies and other breast surgeries “should be considered truly successful only if patients are pain-free.”

Treatment for post-mastectomy pain has a long way to go, said anesthesiologist Sean Mackey, who leads the pain medicine division at Stanford University. Mackey said this “undertreated” condition has no consistent definition for diagnosis, no standardized screening, and no treatment approved by the Food and Drug Administration.

Even the name is a misnomer, Mackey said, since the same pain can arise among women who’ve had other procedures, including lumpectomies and lymph node surgeries.

“The condition was historically dismissed,” Mackey said. “Basically women were told: ‘You’re lucky to be alive. Some pain is expected. Suck it up and deal with it.’”

“That attitude has been slow to change,” he said.

Bank, a New York surgeon who founded a clinic focused on post-mastectomy pain, said the pain is believed to be triggered by nerves that are severed during surgery and then left that way.

The nerves can be sutured back together to minimize pain, Bank said, but most breast surgeons haven’t been trained to do this. So it is not surprising, he said, that some patients say their surgeons were dismissive of their pain after mastectomies.

“When doctors don’t have an answer or don’t know the solution, the easiest thing to do is say there is no problem,” Bank said.

PMPS has been documented among cancer patients since the 1970s. Although the condition does not have an official definition, many researchers describe it as frequent pain in the chest, shoulder, arm, or armpit lasting at least three months after surgery.

Mastectomies intended to prevent breast cancer have become more common among women with elevated risks, including genetic mutations and a family history of the disease.

Bassan’s grandmother died of breast cancer when she was 40. After her father died of cancer in 2023, a genetic test showed that she was at risk. Grieving and afraid, Bassan sought a preventive mastectomy without hesitation, she said.

Bassan said she was also inspired by actor Angelina Jolie, who disclosed her own preventive mastectomy in a 2013 column in The New York Times. Her account had such a significant impact on rates of genetic testing and preventive mastectomies that medical researchers have studied what they call the “Angelina Jolie effect.”

“I was really swayed by that,” Bassan said. “She made it sound, in a way, quite effortless.”

The aftermath of Bassan’s surgery was far worse than she expected. Using a computer for hours triggered paralyzing pain, so she lost her job and has been out of work for more than a year. Prescription pills dulled the pain but left her in a fog, she said. Desperate, she consulted with multiple doctors until one suggested a nerve stimulation machine, which provided fleeting relief.

About nine months after her mastectomy, a breast reconstruction surgery lessened Bassan’s pain, although she said it still returns in occasional waves. Even though her surgeries were covered by insurance, Bassan estimated her pain has cost her more than $200,000 in lost wages and drained savings.

“I did not expect to pay this price to have this surgery,” Bassan said. “I don’t know if it was worth it.”

Other women have no real choice.

No ‘Gold Standard’ Solution

Jeni Golomb, 48, was diagnosed with stage 2 cancer in both breasts in 2023 and had a double mastectomy as soon as she could.

Doctors made boilerplate disclosures of possible complications, Golomb said, but she never heard the words “post-mastectomy pain syndrome” until after she had it.

Golomb now manages her chronic pain by taking 1,500 milligrams a day of gabapentin, an anti-seizure drug that can also be used to treat nerve pain. Golomb said she expects to take the drug for years. If she misses a dose, her pain comes roaring back.

“It was the worst pain I ever felt,” Golomb said. “I labored to 10 centimeters, unmedicated, with one of my children, and that was not as bad as this. It was excruciating.”

Gabapentin has proved effective at helping some mastectomy patients with stubborn pain, while others have responded to electrodes implanted in their spinal column, according to the Baylor study, published in 2024.

But that study also said there is “no current gold standard” for how to treat post-mastectomy pain and a scarcity of high-level evidence for what treatments are effective.

Baylor anesthesiologist Krishna Shah, who co-authored the report, said many patients eventually find a helpful treatment, but it often takes “a bit of trial and error” to identify what works for each.

And sometimes they never find it.

Susan Dishell, 67, said that after her 2017 mastectomy for breast cancer and reconstruction surgery, she struggled for five years with pain in both shoulders, plus a burning sensation that her medical records identified as nerve pain.

Another surgery swapped out her breast implants to erase her shoulder pain in 2022, Dishell said, but doctors warned her then that her other pain was unlikely to improve.

Since then, she has tried prescription drugs, steroid injections, CBD oil, acupuncture, physical therapy, and chiropractor treatments.

None of it worked, she said, so she stopped trying.

“I have not slept through the night since I’ve had this,” Dishell said. “But it’s OK. It’s not the most terrible price to pay to not have breast cancer.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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