Infection rates in this region of the Southwest — the 27,000-square-mile reservation encompasses parts of Arizona, New Mexico, and Utah — are among the nation’s highest. And they’re far worse than anything Wyaco, who is from Zuni Pueblo (about 40 miles south of Gallup) and is the nurse consultant for the Navajo Area Indian Health Service, has seen in her 30-year nursing career.

Syphilis infections nationwide have climbed rapidly in recent years, reaching a 70-year high in 2022, according to the most recent data from the Centers for Disease Control and Prevention. That rise comes amid a shortage of penicillin, the most effective treatment. Simultaneously, congenital syphilis — syphilis passed from a pregnant person to a baby — has similarly spun out of control. Untreated, congenital syphilis can cause bone deformities, severe anemia, jaundice, meningitis, and even death. In 2022, the 231 stillbirths and 51 infant deaths caused by syphilis, out of 3,761 congenital syphilis cases reported that year.

And while infections have risen across the U.S., no demographic has been hit harder than Native Americans. The CDC data released in January shows that the among American Indians and Alaska Natives was triple the rate for African Americans and nearly 12 times the rate for white babies in 2022.

“This is a disease we thought we were going to eradicate not that long ago, because we have a treatment that works really well,” said Meghan Curry O’Connell, a member of the Cherokee Nation and chief public health officer at the Great Plains Tribal Leaders’ Health Board, who is based in South Dakota.

Instead, the rate of congenital syphilis infections among Native Americans ( per 100,000 people in 2022) is now comparable to the rate for the entire U.S. population in 1941 () — before doctors began using penicillin to cure syphilis. (The rate fell to 6.6 nationally in 1983.)

O’Connell said that’s why the Great Plains Tribal Leaders’ Health Board and tribal leaders from North Dakota, South Dakota, Nebraska, and Iowa federal Health and Human Services Secretary Xavier Becerra to declare a public health emergency in their states. A declaration staffing, funding, and access to contact tracing data across their region.

“Syphilis is deadly to babies. It’s highly infectious, and it causes very severe outcomes,” O’Connell said. “We need to have people doing boots-on-the-ground work” right now.

In 2022, New Mexico reported the among states. Primary and secondary syphilis infections, which are not passed to infants, were , which had the second-highest rate of congenital syphilis in 2022. In 2021, the most recent year for which demographic data is available, South Dakota had the nationwide (after the District of Columbia) — and numbers were the state’s .

In , the New Mexico Department of Health noted that the state had “reported a 660% increase in cases of congenital syphilis over the past five years.” A year earlier, in 2017, New Mexico reported only one case — but by 2020, that number had risen to 43, then to 76 in 2022.

Starting in 2020, the covid-19 pandemic made things worse. “Public health across the country got almost 95% diverted to doing covid care,” said Jonathan Iralu, the Indian Health Service chief clinical consultant for infectious diseases, who is based at the Gallup Indian Medical Center. “This was a really hard-hit area.”

At one point early in the pandemic, the Navajo Nation reported the in the U.S. Iralu suspects patients with syphilis symptoms may have avoided seeing a doctor for fear of catching covid. That said, he doesn’t think it’s fair to blame the pandemic for the high rates of syphilis, or the high rates of women passing infections to their babies during pregnancy, that continue four years later.

Native Americans are more likely to , far from , than any other racial or ethnic group. As a result, many do not receive prenatal care until later in pregnancy, if at all. That often means providers cannot test and treat patients for syphilis before delivery.

In New Mexico, did not receive prenatal care until the fifth month of pregnancy or later, or received fewer than half the appropriate number of visits for the infant’s gestational age in 2023 (the national average is less than 16%).

Inadequate prenatal care is especially risky for Native Americans, who have a greater chance than other ethnic groups of passing on a syphilis infection if they become pregnant. That’s because, among Native communities, syphilis infections are just as common in women as in men. , men are at least twice as likely to contract syphilis, largely because men who have sex with men are more susceptible to infection. O’Connell said it’s not clear why women in Native communities are disproportionately affected by syphilis.

“The Navajo Nation is a maternal health desert,” said Amanda Singer, a Diné (Navajo) doula and lactation counselor in Arizona who is also executive director of the Navajo Breastfeeding Coalition/Diné Doula Collective. On some parts of the reservation, patients have to drive more than 100 miles to reach obstetric services. “There’s a really high number of pregnant women who don’t get prenatal care throughout the whole pregnancy.”

She said that’s due not only to a lack of services but also to a mistrust of health care providers who don’t understand Native culture. Some also worry that providers might report patients who use illicit substances during their pregnancies to the police or child welfare. But it’s also because of a shrinking network of facilities: Two of the Navajo area’s labor and delivery wards have closed in the past decade. According to , more than half of U.S. rural hospitals no longer offer labor and delivery services.

Singer and the other doulas in her network believe New Mexico and Arizona could combat the syphilis epidemic by expanding access to prenatal care in rural Indigenous communities. Singer imagines a system in which midwives, doulas, and lactation counselors are able to travel to families and offer prenatal care “in their own home.”

O’Connell added that data-sharing arrangements between tribes and state, federal, and IHS offices vary widely across the country, but have posed an additional challenge to tackling the epidemic in some Native communities, including her own. Her Tribal Epidemiology Center is South Dakota’s state data.

In the Navajo Nation and surrounding area, Iralu said, IHS infectious disease doctors meet with tribal officials every month, and he recommends that all IHS service areas have regular meetings of state, tribal, and IHS providers and public health nurses to ensure every pregnant person in those areas has been tested and treated.

IHS now recommends all patients be tested for syphilis yearly, and tests pregnant patients three times. It also expanded rapid and express testing and started offering DoxyPEP, an antibiotic that transgender women and men who have sex with men can take up to 72 hours after sex and that has been shown to reduce syphilis transmission . But perhaps the most significant change IHS has made is offering testing and treatment in the field.

Today, the public health nurses Wyaco supervises can test and treat patients for syphilis at home — something she couldn’t do when she was one of them just three years ago.

“Why not bring the penicillin to the patient instead of trying to drag the patient in to the penicillin?” said Iralu.

It’s not a tactic IHS uses for every patient, but it’s been effective in treating those who might pass an infection on to a partner or baby.

Iralu expects to see an expansion in street medicine in urban areas and van outreach in rural areas, in coming years, bringing more testing to communities — as well as an effort to put tests in patients’ hands through vending machines and the mail.

“This is a radical departure from our past,” he said. “But I think that’s the wave of the future.”

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

USE OUR CONTENT

This story can be republished for free (details).

The added services would provide care to patients who live in largely rural eastern Iowa, including some of the hundreds previously treated at a University of Iowa clinic, saving them half-day drives to clinics in larger cities like Chicago and Minneapolis.

By June, The Project of the Quad Cities, as the Illinois clinic is called, had hired a provider who specializes in transgender health care. So, Andy Rowe, The Project’s health care operations director, called the clinic’s insurance broker to see about getting the new provider added to the nonprofit’s malpractice policy.

“I didn’t anticipate that it was going to be a big deal,” Rowe said. Then the insurance carriers’ quotes came. The first one specifically excluded gender-affirming care for minors. The next response was the same. And the one after that. By early November, more than a dozen malpractice insurers had declined to offer the clinic a policy.

Rowe didn’t know it at the time, but he wasn’t alone in his frustrating quest.

Nearly half the states for transgender youth. Independent clinics and medical practices located in states where such care is either allowed or protected have moved to fill that void for patients commuting or relocating across state lines. But as the risk of litigation rises for clinics, obtaining malpractice insurance on the commercial marketplace has become a quiet barrier to offering care, even in states with legal protections for health care for trans people. In extreme cases, lawmakers have deployed malpractice insurance regulations against gender-affirming care in states where courts have slowed or blocked anti-trans legislation.

Five months after starting his search for malpractice insurance, Rowe said, he received a quote for a policy that would allow The Project to treat trans youth. That’s when he realized finding a policy was only the first hurdle. He expected the coverage to cost $8,000 to $10,000 a year, but he was quoted $50,000.

Rowe said he hadn’t experienced anything like it in his 20 years working in health care administration.

Insurance industry advocates argue that higher premiums are justified because the rise in legislation surrounding gender-affirming care for minors means clinics are at increased risk of being sued.

“If state laws increase the risk of civil liability for health professionals, premiums will be adjusted accordingly and appropriately to reflect the level of financial risk incurred by the insured,” Mike Stinson, vice president of public policy and legal affairs at the Medical Professional Liability Association, an insurance trade association, said in an emailed statement. If state laws make an activity illegal, then insurance will not cover it at all, he said.

Only a few states have passed laws preventing malpractice insurers from treating gender-affirming care differently than other care. Massachusetts was the first, when that says insurers could not increase rates for health care providers for offering services that are illegal in other states.

Since then, five other states have passed laws requiring malpractice insurers to treat gender-affirming health care as they do any other legally protected health activity: , , New York, , and (similar legislation is pending in ).

“This was a preventative measure, and it was met with full acceptance by both the insured and the insurers,” said Vermont , a Democrat who co-sponsored the state’s law. She said lawmakers consulted with both physicians and malpractice insurance companies to make sure the language was accurate. Insurers just wanted to be able to clearly assess the risk, she said.

Lyons said she hadn’t heard of any providers in Vermont who had trouble with their malpractice insurance before the law was enacted, but she was concerned politics might get in the way of doctors’ ability to offer care. In March 2022, reported that one Texas doctor had stopped offering care because his malpractice provider had stopped covering hormone therapy for minors.

Lawmakers in some states have gone further and revised malpractice provisions to restrict access to gender-affirming care, often while bans on offering that care to trans youth are stalled in court. In 2021, Arkansas became the first state to ban gender-affirming care for trans children. When that ban was held up in court last year, the a new law allowing anyone who received gender-affirming care as a minor to file a malpractice lawsuit up to 15 years after they turn 18.

Similar laws followed in , , and all extending the statute of limitations on filing a malpractice claim anywhere from 15 to 30 years. (Another was introduced but that would have stretched the statute of limitations to the length of the patient’s life.) Typically, malpractice suits within one to three years of injury.

The civil liability that those laws created has forced at least one clinic to stop offering some treatments. The Washington University Transgender Center in Missouri subjected the clinic to “unacceptable level of liability.”

Alejandra Caraballo, a civil rights attorney and clinical instructor at the Harvard Law School Cyberlaw Clinic, said there has been “a concerted effort on the part of anti-trans activists to utilize malpractice insurance as a means of eliminating care.”

She likens the strategy to laws that have long targeted abortion providers by increasing “legal liability to chill a certain type of conduct.”

Anti-trans activists have drawn attention to a small number of “detransitioners,” who have filed lawsuits against the doctors who provided them with gender-affirming care, she said. She believes those lawsuits, filed in such states as California, Nebraska, and North Carolina, will be used to lobby for longer statutes of limitations and to create the perception that liability for providers is increasing.

For independent clinics, like The Project in the Quad Cities, and small medical practices that purchase their malpractice insurance on the commercial marketplace, those tactics are restricting their ability to offer care. Many providers of gender-affirming care are protected from rising premiums such as health centers that receive federal funding, which are covered under the Federal Tort Claims Act, or academic medical centers and Planned Parenthood clinics, which are self-insured. But a small number of independent clinics have been priced out.

In Albuquerque, New Mexico, a state that, like Illinois, has protected access to gender-affirming care, family medicine physician Anjali Taneja said the clinic where she works is running into the same trouble getting coverage.

Casa de Salud, where Taneja is the executive director, has provided gender-affirming care to adults for years, but when the clinic decided to start offering that care to younger patients, insurers wouldn’t issue a malpractice policy. The clinic was quoted “double what we paid a few years ago,” just to cover the gender-affirming care it offers to adults, Taneja said.

The red tape both Casa de Salud and The Project are encountering has prevented treatment for patients. When Iowa’s ban on gender-affirming care took effect Sept. 1, officials at The Project had hoped to offer services to the transgender youth who previously sought care an hour west at the University of Iowa’s LGBTQ Clinic. Instead, Rowe said, patients are making the difficult decision between going without treatment or commuting four hours to Chicago or Minneapolis.

After months of fundraising, The Project has almost enough money to pay for the $50,000 malpractice policy. But, Rowe said, “it’s a tough swallow.”

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

USE OUR CONTENT

This story can be republished for free (details).

Machado, 36, is transgender and has good health insurance through her job. Within weeks, she was able to get into a small primary care clinic, where her sister was already a patient and where the doctor was willing to refill her estrogen prescription and refer her to an endocrinologist.

She felt fortunate. “I know that a lot of the larger medical institutions here are pretty slammed,” she said.

Other patients seeking gender-affirming health care in New Mexico, where access is protected by law, haven’t been as lucky.

After her primary care doctor retired in 2020, Anne Withrow, a 73-year-old trans woman who has lived in Albuquerque for over 50 years, sought care at Truman Health Services, a clinic specializing in transgender health care at the University of New Mexico. “They said, ‘We have a waiting list.’ A year later they still had a waiting list. A year later, before I managed to go back, I got a call,” she said.

But instead of the clinic, the caller was a provider from a local community-based health center who had gotten her name and was able to see her. Meanwhile, the state’s premier clinic for transgender health is still at capacity, as of October, and unable to accept new patients. Officials said they have stopped trying to maintain a waitlist and instead refer patients elsewhere.

Over the past two years, as nearly half of states restricting gender-affirming health care, many transgender people began relocating to states that protect access. But not all those states have had the resources to serve everyone. Cities like San Francisco, Chicago, and Washington, D.C., have large LGBTQ+ health centers, but the high cost of living keeps many people from settling there. Instead, many have chosen to move to New Mexico, which has prohibited restrictions on gender-affirming care, alongside states like Minnesota, Colorado, Vermont, and Washington.

But those new arrivals have found that trans-friendly laws don’t necessarily equate to easy access. Instead, they find themselves added to ever-growing waitlists for care in a small state with a long-running physician shortage.

“With the influx of gender-refugees, wait times have increased to the point that my doctor and I have planned on bi-yearly exams,” Felix Wallace, a 30-year-old trans man, said in an email.

When T. Michael Trimm started working at the Transgender Resource Center of New Mexico in late 2020, he said, the center fielded two or three calls a month from people thinking about moving to the state. “Since then, it has steadily increased to a pace of one or two a week,” he said. “We’ve had folks from as far away as Florida and Kentucky and West Virginia.” That’s not to mention families in Texas “looking to commute here for care, which is a whole other can of worms, trying to access care that’s legal here, but illegal where they live.”

In its 2023 legislative session, New Mexico protecting LGBTQ+ rights, including one that prohibits public bodies from restricting gender-affirming care.

“I feel really excited and proud to be here in New Mexico, where it’s such a strong stance and such a strong refuge state,” said Molly McClain, a family medicine physician and medical director of the Deseo clinic, which serves transgender youth at the University of New Mexico Hospital. “And I also don’t think that that translates to having a lot more care available.”

The U.S. Department of Health and Human Services has designated part or all of 32 of New Mexico’s 33 counties as . A found the state had lost in the previous four years. The state is on track to have in the country by 2030, and it already has the oldest physician workforce. The majority of are near Albuquerque and Santa Fe, but live in rural regions.

Even in Albuquerque, waitlists to see any doctor are long, which can be difficult for patients desperate for care. McClain noted that the rates of self-harm and suicidal ideation can be very high for transgender people who are not yet able to fully express their identity.

That said, Trimm adds that “trans folks can be very resilient.”

Some trans people have to wait many years to receive transition-related medical care, even “when they’ve known this all their lives,” he said. Although waiting for care can be painful, he hopes a waitlist is easier to endure “than the idea that you maybe could never get the care.”

New Mexico had already become a haven for patients seeking abortion care, which was criminalized in many surrounding states over the past two years. But McClain noted that providing gender-affirming care requires more long-term considerations, because patients will need to be seen regularly the rest of their lives. We’re “working really hard to make sure that it is sustainable,” she said.

As part of that work, McClain and others at the University of New Mexico, in partnership with the Transgender Resource Center, have started to train providers statewide. They especially want to reach those in rural areas. The program began in June and has had about 90 participants at each of its biweekly sessions. McClain estimates about half have been from rural areas.

“It’s long been my mantra that this is part of primary care,” McClain said. As New Mexico has protected access to care, she’s seen more primary care providers motivated to offer puberty blockers, hormone therapy, and other services to their trans patients. “The point really is to enable people to feel comfortable and confident providing gender care wherever they are.”

There are still significant logistical challenges to providing gender-affirming care in New Mexico, said Anjali Taneja, a family medicine physician and executive director of Casa de Salud, an Albuquerque primary care clinic serving uninsured and Medicaid patients.

“There are companies that are outright refusing to provide [malpractice] insurance coverage for clinics doing gender-affirming care,” she said. Casa de Salud has long offered gender-affirming care, but, Taneja said, it was only this year that the clinic found malpractice insurance that would allow it to treat trans youth.

Meanwhile, reproductive health organizations and providers are trying a clinic — one that will also offer gender-affirming care — in southern New Mexico, with $10 million from the state legislature. Planned Parenthood of the Rocky Mountains will be part of that effort, and, although the organization does not yet offer gender-affirming care in New Mexico, spokesperson Kayla Herring said, it plans to do so.

Machado said the vitriol and hatred directed at the trans community in recent years is frightening. But if anything good has come of it, it’s the attention the uproar has brought to trans stories and health care “so that these conversations are happening, rather than it being something where you have to explain to your doctor,” she said. “I feel very lucky that I was able to come here because I feel way safer here than I did in other places.”

This article was supported by the Journalism and Women Symposium Health Journalism Fellowship, with the support of The Commonwealth Fund.

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

USE OUR CONTENT

This story can be republished for free (details).

During the early months of the covid-19 outbreak, Wangler and her colleagues had worked at a hospital in this former railroad hub of about 21,000 residents just a few miles from the Navajo Nation. The pandemic had been hard on Rehoboth McKinley Christian Hospital. Emergency federal funding was drying up and nearly a third of the staff — including Wangler, the chief medical officer — left after its board of trustees hired an out-of-state, for-profit management services firm to take over operations in August 2020.

The group of former hospital employees in Wangler’s backyard that afternoon in June 2022, including two OB-GYNs and a chaplain, knew the situation was dire and wondered what they could do.

Wangler said they realized “the most important thing we could do for the community is have good access to primary care.”

The health care cliff Wangler and her former colleagues confronted is one that has challenged dozens of rural communities over the past two decades.

By late 2022, the hospital had and lost most of its primary care doctors. Gallup’s McKinley County was recording the largest primary care provider deficit in rural New Mexico — and local doctors knew that could lead to an increase in untreated conditions and patients seeking emergency rather than preventive care.

As of July 11, have shuttered inpatient units or closed their doors altogether in the United States since 2005. Hundreds of others, like the one in Gallup, have cut services. Meanwhile, from 2006 to 2018, the combined number of Federally Qualified Health Centers and Rural Health Centers — outpatient clinics that receive federal funding to operate in medically underserved areas — , according to a 2021 study from the University of North Carolina-Chapel Hill. By 2019, accessed care at such community health centers.

In response to the challenges facing their hospital, Wangler and the colleagues who’d gathered in her yard decided to open their own physician-led, nonprofit clinic, which is on its way to becoming an FQHC Look-Alike, an organization that meets the eligibility requirements of an FQHC but does not receive grant funding. That status will qualify the clinic for multiple types of federal aid including drug pricing discounts. Since it opened its doors last August, Gallup Community Health has treated about 3,000 patients in its stucco office space just a block from the historic U.S. Route 66. Many of GCH’s doctors came to Gallup from elsewhere and could have left town for more lucrative jobs. Instead, they decided to stay and attempt to fill primary care gaps.

“I’ve not seen [an FQHC] like this,” said Tim Putnam, a faculty member of the Medical University of South Carolina, a former hospital CEO, and a past president of the National Rural Health Association. Although it’s rare, if not a first, for physicians to lead their own FQHC, he said, it’s not uncommon to see FQHCs started by community groups, and in Gallup “the physicians are so dedicated to the community” that they’re like a community group themselves.

Unlike rural hospitals, which are increasingly being purchased by private equity firms and to increase profits, these health centers primary care regardless of patients’ ability to pay and be overseen by a board made up primarily of patients. But while clinics provide important primary care services, researchers note that they struggle to fill the gaps in specialty and emergency care left by hospital closures.

Marcie Richmond, one of the clinic’s family medicine doctors, came to Gallup for the same reason that drew many of her colleagues: “to work with populations that might not be receiving much care.” She envisions a day when more of the Gallup area’s providers come from the local Navajo and Zuni communities, but until then she hopes to continue offering much-needed “care for people who are victims of chronic injustice.”

The clinic’s interior reflects that care: Indigenous children’s books like “Where Did You Get Your Moccasins?” and “We Sang You Home” fill the lobby, prints by Zuni artist Mallery Quetawki are going up in exam rooms, and watercolors of nearby Red Rock Park and photographs of Canyon de Chelly hang in the hallways.

On a Thursday morning in April, Renie Lente and her sister, Elsie, waited for their appointment.

Elsie has cerebral palsy and lives in a nursing home; Lente is her caregiver. Lente had called the night before after she noticed a fungal infection on Elsie’s foot, and the clinic was able to fit her in the next morning with the provider who treats her whole family. The community clinic is a “big change” from Rehoboth McKinley, where, Lente said, there was a backlog to be seen by primary care providers that left patients turning to the emergency room. After family medicine physician Neil Jackson treated Elsie, making space in the small exam room for both sisters and nursing home staffers, Lente noted that she appreciated how Jackson “treats you like family.”

“One of the things that the staff committed to from the beginning was doing what was right for the patient and figuring out finances later,” said Wangler, the clinic’s executive director.

The clinic opened its doors in large part thanks to contributions from the community: A statewide hospital system donated equipment, Gallup residents raised $30,000, and more than half the doctors volunteered their time or asked not to be paid until the clinic was operating in the black.

The team intended to offer some reproductive health care, but not prenatal care. Their clinic wasn’t a hospital, so patients would have to give birth elsewhere. But by the time the clinic opened, Rehoboth McKinley had closed its labor and delivery unit after every OB-GYN left the hospital, forcing pregnant patients to transfer their care to the local Indian Health Service facility — a sizable hospital where many Native Americans can seek care but which not all of them prefer — or to a hospital more than an hour’s drive away.

The doctors quickly started looking into what it would take to offer prenatal care. They wanted at least to save patients from having to choose between spending hours and gas money traveling for appointments and forgoing prenatal care entirely. By November, the community had raised $24,000 to pay for prenatal malpractice insurance. And during that time the clinic’s OB-GYNs and OB-trained family medicine doctors developed a plan for providing prenatal care while maintaining relationships with the more distant hospitals where their patients could deliver.

Clinic leaders intend to keep the doors open by applying for it to become a Federally Qualified Health Center Look-Alike. That would qualify it for higher Medicare and Medicaid payments.

Clinic staffers hope providing quality outpatient care can minimize hospitalizations and the need to travel for specialty care. One of the tools helping GCH doctors provide that care is the University of New Mexico Health System’s PALS, a hotline service that connects physicians anywhere in the state with specialists who can answer questions about care outside their area of practice.

“There’s a physician shortage everywhere and a real understanding that it is challenging for people to get in from the rural setting,” said Wangler, who added that specialists have been amenable to partnering and offering guidance.

Doctors like Jackson say the tight-knit community in Gallup made them want to stay and try to fill the primary care void. “All of the folks that I’m working with here are truly rooted in the community and going to be here for better or worse.”

This article was supported by Health Journalism Fellowship, with the support of .

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

USE OUR CONTENT

This story can be republished for free (details).