From her base in Gallup, New Mexico, Melissa Wyaco supervises about two dozen public health nurses who crisscross the sprawling Navajo Nation searching for patients who have tested positive for or been exposed to a disease once nearly eradicated in the U.S.: syphilis.

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 CDC recorded 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 rate of congenital syphilis 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 (644.7 cases per 100,000 people in 2022) is now comparable to the rate for the entire U.S. population in 1941 (651.1) — 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 have asked federal Health and Human Services Secretary Xavier Becerra to declare a public health emergency in their states. A declaration would expand 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 highest rate of congenital syphilis among states. Primary and secondary syphilis infections, which are not passed to infants, were highest in South Dakota, 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 second-worst rate nationwide (after the District of Columbia) — and numbers were highest among the state’s large Native population.

In an October news release, 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 highest covid rate 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 live in rural areas, far from hospital obstetric units, 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, 23% of patients 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. In every other ethnic group, 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 a recent report, 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 fighting to access 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 by 87%. 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.”

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Bill Hall, 71, has been fighting for his life for 38 years. These days, he’s feeling worn out.

Hall contracted HIV, the virus that can cause AIDS, in 1986. Since then, he’s battled depression, heart disease, diabetes, non-Hodgkin lymphoma, kidney cancer, and prostate cancer. This past year, Hall has been hospitalized five times with dangerous infections and life-threatening internal bleeding.

But that’s only part of what Hall, a gay man, has dealt with. Hall was born into the Tlingit tribe in a small fishing village in Alaska. He was separated from his family at age 9 and sent to a government boarding school. There, he told me, he endured years of bullying and sexual abuse that “killed my spirit.”

Because of the trauma, Hall said, he’s never been able to form an intimate relationship. He contracted HIV from anonymous sex at bath houses he used to visit. He lives alone in Seattle and has been on his own throughout his adult life.

“It’s really difficult to maintain a positive attitude when you’re going through so much,” said Hall, who works with Native American community organizations. “You become mentally exhausted.”

It’s a sentiment shared by many older LGBTQ+ adults — most of whom, like Hall, are trying to manage on their own.

Of the 3 million Americans over age 50 who identify as gay, bisexual, or transgender, about twice as many are single and living alone when compared with their heterosexual counterparts, according to the National Resource Center on LGBTQ+ Aging.

This slice of the older population is expanding rapidly. By 2030, the number of LGBTQ+ seniors is expected to double. Many won’t have partners and most won’t have children or grandchildren to help care for them, AARP research indicates.

They face a daunting array of problems, including higher-than-usual rates of anxiety and depression, chronic stress, disability, and chronic illnesses such as heart disease, according to numerous research studies. High rates of smoking, alcohol use, and drug use — all ways people try to cope with stress — contribute to poor health.

Keep in mind, this generation grew up at a time when every state outlawed same-sex relations and when the American Psychiatric Association identified homosexuality as a psychiatric disorder. Many were rejected by their families and their churches when they came out. Then, they endured the horrifying impact of the AIDS crisis.

“Dozens of people were dying every day,” Hall said. “Your life becomes going to support groups, going to visit friends in the hospital, going to funerals.”

It’s no wonder that LGBTQ+ seniors often withdraw socially and experience isolation more commonly than other older adults. “There was too much grief, too much anger, too much trauma — too many people were dying,” said Vincent Crisostomo, director of aging services for the San Francisco AIDS Foundation. “It was just too much to bear.”

In an AARP survey of 2,200 LGBTQ+ adults 45 or older this year, 48% said they felt isolated from others and 45% reported lacking companionship. Almost 80% reported being concerned about having adequate social support as they grow older.

Embracing aging isn’t easy for anyone, but it can be especially difficult for LGBTQ+ seniors who are long-term HIV survivors like Hall.

Related Links

• Americans With HIV Are Living Longer. Federal Spending Isn’t Keeping Up. Jun 17, 2024
• ‘Stonewall Generation’ Confronts Old Age, Sickness — And Discrimination May 22, 2019
• Staying Out Of The Closet In Old Age Oct 17, 2016

Of 1.2 million people living with HIV in the United States, about half are over age 50. By 2030, that’s estimated to rise to 70%.

Christopher Christensen, 72, of Palm Springs, California, has been HIV-positive since May 1981 and is deeply involved with local organizations serving HIV survivors. “A lot of people living with HIV never thought they’d grow old — or planned for it — because they thought they would die quickly,” Christensen said.

Jeff Berry is executive director of the Reunion Project, an alliance of long-term HIV survivors. “Here people are who survived the AIDS epidemic, and all these years later their health issues are getting worse and they’re losing their peers again,” Berry said. “And it’s triggering this post-traumatic stress that’s been underlying for many, many years. Yes, it’s part of getting older. But it’s very, very hard.”

Being on their own, without people who understand how the past is informing current challenges, can magnify those difficulties.

“Not having access to supports and services that are both LGBTQ-friendly and age-friendly is a real hardship for many,” said Christina DaCosta, chief experience officer at SAGE, the nation’s largest and oldest organization for older LGBTQ+ adults.

Diedra Nottingham, a 74-year-old gay woman, lives alone in a one-bedroom apartment in Stonewall House, an LGBTQ+-friendly elder housing complex in New York City. “I just don’t trust people,“ she said. “And I don’t want to get hurt, either, by the way people attack gay people.”

When I first spoke to Nottingham in 2022, she described a post-traumatic-stress-type reaction to so many people dying of covid-19 and the fear of becoming infected. This was a common reaction among older people who are gay, bisexual, or transgender and who bear psychological scars from the AIDS epidemic.

Nottingham was kicked out of her house by her mother at age 14 and spent the next four years on the streets. The only sibling she talks with regularly lives across the country in Seattle. Four partners whom she’d remained close with died in short order in 1999 and 2000, and her last partner passed away in 2003.

When I talked to her in September, Nottingham said she was benefiting from weekly therapy sessions and time spent with a volunteer “friendly visitor” arranged by SAGE. Yet she acknowledged: “I don’t like being by myself all the time the way I am. I’m lonely.”

Donald Bell, a 74-year-old gay Black man who is co-chair of the Illinois Commission on LGBTQ Aging, lives alone in a studio apartment in subsidized LGBTQ+-friendly senior housing in Chicago. He spent 30 years caring for two elderly parents who had serious health issues, while he was also a single father, raising two sons he adopted from a niece.

Bell has very little money, he said, because he left work as a higher-education administrator to care for his parents. “The cost of health care bankrupted us,” he said. (According to SAGE, one-third of older LGBTQ+ adults live at or below 200% of the federal poverty level.) He has hypertension, diabetes, heart disease, and nerve damage in his feet. These days, he walks with a cane.

To his great regret, Bell told me, he’s never had a long-term relationship. But he has several good friends in his building and in the city.

“Of course I experience loneliness,” Bell said when we spoke in June. “But the fact that I am a Black man who has lived to 74, that I have not been destroyed, that I have the sanctity of my own life and my own person is a victory and something for which I am grateful.”

Now he wants to be a model to younger gay men and accept aging rather than feeling stuck in the past. “My past is over,” Bell said, “and I must move on.”

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.

Subscribe to KFF Health News’ free Morning Briefing.

This article first appeared on KFF Health News and is republished here under a Creative Commons license.