Listen: More than 2 million Americans could benefit from PrEP, but only about a quarter of them are getting the HIV prevention medication. On Feb. 4, during WAMU’s “Health Hub,” 麻豆女优 Health News reporter Zach Dyer shared tips for overcoming common hurdles to care.

Billing mistakes. Stigma. Doctors who aren’t keeping up with the latest research. Those are just some of the hurdles that keep HIV prevention medication out of reach for many Americans.

The Centers for Disease Control and Prevention estimates more than 2 million Americans could benefit from a treatment known as PrEP, but only a quarter of them are getting a form of the drug. Zach Dyer appeared on WAMU’s “Health Hub” on Feb. 4 to share tips patients can use to avoid those pitfalls and find a doctor who knows more about PrEP.

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When Matthew Hurley was looking to take PrEP to prevent HIV, the doctor hadn’t heard of the medicine, and when he finally did prescribe PrEP, the bills sent to Hurley were expensive 鈥� and wrong. “I decided to write in because the process was really super frustrating.” At one point, Hurley asked, “Am I just going to stop this medication to stop having to deal with these coding issues and these scary bills?”

鈥� Matthew Hurley, 30, from Berkeley, California

A couple of years ago, Matthew Hurley got the kind of text people fear.

It said: “When was the last time you were STD tested?”

Someone Hurley had recently had unprotected sex with had just tested positive for HIV.

Hurley went to a clinic and got tested. “Luckily, I had not caught HIV, but it was a wake-up call,” they said.

That experience moved Hurley to seek out PrEP, shorthand for preexposure prophylaxis. The antiretroviral medication greatly reduces the chance of getting HIV, the virus that causes AIDS. The therapy is at protecting people against sexual transmission when taken as prescribed.

Hurley started PrEP and all was well for the first nine months 鈥� until their health insurance changed and they started seeing a new doctor: “When I brought PrEP up to him, he said, 鈥榃hat’s that?’ And I was like, oh boy.”

Hurley, who is a librarian, went into teaching mode. They explained that the PrEP regimen they’d been on required daily pills and lab work every three months to look out for breakthrough infections or other health issues.

Hurley was surprised they knew more about PrEP than the physician. The FDA approved the first drug, Truvada, , and Hurley lives in the San Francisco Bay Area, a place with one of the of LGBTQ+ people in the nation and a of HIV and health care activism. Hurley said older friends and acquaintances who survived the AIDS epidemic shared the horror of living through a time when there was no effective treatment or drugs for prevention. Deciding to take PrEP felt like an empowering way to protect their health and their community.

So Hurley pushed the doctor, and after the physician did his own research, he agreed to prescribe PrEP.

Hurley got the care they needed, but they had to be the expert in the exam room.

“That’s a big burden,” said Beth Oller, a family medicine physician and board member of GLMA, a national organization of LGBTQ+ and allied health care professionals focused on health equity. “You really want someone you can just go in and talk [to] about your health concerns without feeling like you are having to educate and advocate for yourself at every turn.”

Oller said many queer people have had during health care visits.

“I have a lot of patients who had not done preventive care for years because of the medical stigma,” she said.

Billing Headaches

Clearing the access hurdles to HIV prevention medicine was just the beginning. Hurley started receiving a string of bills for PrEP-related care. Blood test: $271.80. Office visit: $263.

Again, Hurley was surprised. They knew 鈥� even if the billing office didn’t 鈥� that under the most private insurance plans and Medicaid expansion programs are PrEP and ancillary services, , as preventive with no cost sharing.

The bills for doctor visits and blood draws piled up.

Hurley would appeal the bill and get a denial almost every time. Then, they would appeal again.

Hurley shared a series of appeal letters for one service, in which the billing office acknowledged that blood work had been initially incorrectly coded as diagnostic. Once that was corrected, Hurley said, the insurer paid for the service.

That might sound quick or easy to resolve, but Hurley said it took “forever to get through the process.” They dealt with at least six incorrect bills over several months. Hurley estimated they spent more than 60 hours contesting the bills.

During that time, Hurley said, the billing department “is continuing to send me emails and bills that are saying, You’re overdue. You’re overdue. You’re overdue.”

Fed up with the hassles, Hurley decided to find a health provider (and billing office) better informed about PrEP. They settled on the AIDS Healthcare Foundation. The care team there was able to discuss the pros and cons of different PrEP regimens and knew how to navigate the formulary for Hurley’s insurance.

Hurley hasn’t gotten an unexpected bill since.

But siloing sexual health care and PrEP off from primary care hasn’t been ideal.

“I have multiple organizations that I have to deal with to get my holistic health dealt with,” Hurley said.

A provider doesn’t need to be an HIV specialist, an infectious disease expert, or a physician to prescribe PrEP. The Centers for Disease Control and Prevention encourages primary care providers to treat PrEP like .

To avoid some of the headaches Hurley faced, try these tips:

1. Find out if PrEP is right for you.

The CDC estimates Americans could benefit from HIV prevention drugs, but just over a quarter of that group have been prescribed them.

“Not enough people know about PrEP, and there are a number of people who know about PrEP but do not realize it’s for them,” said Jeremiah Johnson, executive director of PrEP4All, an organization dedicated to universal access to HIV prevention and medication.

According to the CDC’s clinical guidelines, PrEP can be prescribed as part of a preventive health plan to . It’s especially recommended for people who don’t use condoms consistently, intravenous drug users who share needles, men who have sex with men, and people in relationships with partners living with HIV or whose HIV status is unclear.

The vast majority of PrEP users are men. There are big race, gender, and geographical of HIV and the populations taking the prevention medicine. For example, based on the patterns of new infection in the U.S., a group that would benefit from PrEP is cisgender Black women, whose gender identity aligns with their sex assigned at birth.

2. Don’t assume your provider knows about PrEP.

If your doctors aren’t well informed, start by . There are also clinical guidelines and information you can share with your provider. Check your state or local health department for a how-to guide for prescribing PrEP. For example, the New York State Department of Health AIDS Institute has information .

The , but many of the agency’s websites dealing with LGBTQ+ health are in flux. Under the Trump administration, some HIV/AIDS resources have been taken down from federal websites. Others now have : “This page does not reflect biological reality and therefore the Administration and this Department rejects it.”

3. Get lab work in-network.

Johnson said Hurley’s experience with billing mistakes is common. “The lab expenses in particular end up being very tricky,” Johnson said.

For example, a doctor’s office may mistakenly code the lab work required for PrEP as a instead of preventive care. Patients like Hurley can end up with a bill they shouldn’t have to pay. If your doctor’s office is making mistakes, share the from NASTAD, an association of public health officials who administer HIV and hepatitis programs.

Try to get your lab work done in-network. If the lab is out-of-network, Johnson said, it can be difficult to appeal.

If the bills keep coming, appeal them. And if you can’t resolve the dispute, Johnson said, file a complaint with the agency that regulates your insurance plan.

4. Look for ways to save.

There are different kinds of PrEP. There are lower-cost, generic versions of Truvada, for example, sold as emtricitabine/tenofovir disoproxil fumarate, often shortened to FTC/TDF. Newer PrEP drugs have list prices in the thousands of dollars. Check your insurance formulary and ask your doctor to prescribe medicine your plan will cover.

With many health care premiums dramatically increasing and millions at risk of losing Medicaid coverage, many people may go without health insurance this year. Drug manufacturers such as and have assistance programs for qualifying patients. If you have to pay out-of-pocket, prescription price comparison websites, like GoodRx, can help you find the pharmacies with the cheapest price.

5. Consider telehealth.

Telehealth is an option if you don’t live near an affirming provider or are looking for a more private way to get PrEP. In 2024, roughly 1 in 5 people on PrEP used telemedicine. Online pharmacies like and offer PrEP without an in-person appointment, and lab work can be done at home. Some telehealth options have ways to if you’re uninsured.

Telehealth can also broaden the number of doctors who are ready to prescribe PrEP. And some patients say speaking with a remote provider feels like a safer setting to talk about sexual health. “They’re in the comfort of their own bedroom or living room but can interface virtually with a provider. It can open up a lot of doors for honesty and trust,” said Alex Sheldon, executive director of GLMA.

6. Seek out affirming care.

GLMA created the , a searchable database of health care providers across the nation who identify as queer-friendly. As Hurley discovered, living in a major metro area is no guarantee your doctor is up to date on LGBTQ+ health care.

Ask locals you trust for recommendations. You might be surprised to find good options nearby.

Health Care Helpline helps you navigate the health system hurdles between you and good care. Send us your tricky question and we may tap a policy sleuth to puzzle it out.听Share your story. The crowdsourced project is a joint production of NPR and 麻豆女优 Health News.

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“I want people to not kill themselves for who they are,” said organizer Myk Mendez, a trans and two-spirit citizen of the Fort Hall Shoshone-Bannock Tribes in Idaho. “I want people to love their lives and grow old to tell their stories.”

“Two-spirit” is used by Native Americans to describe a distinct gender outside of male or female.

The conference in Elko reflects how some tribal citizens are supporting their LGTBQ+ community members as President Donald Trump rolls back protections and policies. In March, the National Indian Health Board, which represents and advocates for federally recognized Native American and Alaska Native tribes, declaring tribal sovereignty over issues affecting the Native American community’s health, including access to gender-affirming care.

The resolution calls on the federal government to preserve and expand programs that support the health and well-being of two-spirit and LGBTQ+ Native Americans. Tribes and tribal organizations are navigating how to uphold their sovereignty without jeopardizing the relationships and resources that support their communities, said Jessica Leston, the owner of the Raven Collective, a Native public health consulting group, and a member of the Ketchikan Indian Community.

In January, Trump signed an executive order recognizing 鈥� male and female 鈥� and another to terminate programs within the federal government.

describing two-spirit people was removed this year but restored following a court order. The page now has a disclaimer at the top that declares any information on it “promoting gender ideology” is “disconnected from the immutable biological reality that there are two sexes, male and female.”

Two-spirit is not a sexual orientation but refers to people of a “culturally and spiritually distinct gender exclusively recognized by Native American Nations,” according to a definition created by two-spirit elders in 2021. According to two-spirit leaders, people who did not fit into the Western binary of male and female have lived in their communities since before colonization.

Already, tribal citizens and leaders say some people have had trouble accessing gender-affirming care in recent months, with some community members being denied hormone treatments or having their medications delayed, even in places where gender-affirming care remains legal. Panic has spread, and tribal citizens have considered leaving the country.

“There is a chilling effect,” said Itai Jeffries, who is trans, nonbinary, and two-spirit, of the Occaneechi people from North Carolina, and a consultant for the Raven Collective.

Mendez said he requested hormone treatment at his local Indian Health Service clinic at the end of June and was told by his provider that the facility has had trouble receiving the treatment for patients.

Lenny Hayes, a two-spirit citizen of the Sisseton-Wahpeton Oyate in South Dakota, said the Indian Health Service clinic on the reservation also isn’t dispensing hormone treatment, though it is legal for people 18 and older. Hayes is the owner and operator of Tate Topa Consulting and provides educational training on two-spirit and LGTBQ+ Native Americans and Alaska Natives.

The National Congress of American Indians to encourage the creation of policies to protect two-spirit and LGBTQ+ communities. And the organization in 2021 to support providing gender-affirming care in Indian Health Service, tribal, and urban facilities.

The National Indian Health Board’s resolution cites homophobia and transphobia as contributing to higher rates of truancy, incarceration, self-harm, attempted suicide, and suicide among two-spirit young people. The board also lists health disparities among the broader Native LGBTQ+ population, including increased risks of anxiety, depression, and suicide.

Two-spirit and LGBTQ+ Native American and Alaska Native young people are , and sexual exploitation. In Minnesota, found that two-spirit and LGBTQ+ Native American and Alaska Native students had the highest rates of those ages 15-19 who responded “yes” to having traded sex or sexual activity for money, food, drugs, alcohol, or shelter.

Tribal leaders are also concerned that Medicaid cuts recently approved in Trump’s budget law will undercut efforts to expand testing and treatment for HIV infection in Native American communities.

The rates of HIV diagnosis among Native American and Alaska Native gay and bisexual men from 2018 to 2022, according to the Centers for Disease Control and Prevention.

Despite this increase, Native American and Alaska Native gay and bisexual men are among the groups with the least access to HIV tests outside of health care settings, such as community-based organizations, mobile testing units, and shelters.

As tribes respond to state and federal regulations of two-spirit and LGBTQ+ people, organizations and communities are focused on providing information and resources to protect those in Indian Country, even from the president.

“He will never, ever wipe out our identity, no matter what he does,” Hayes said.

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The couple waited months to have sex until Smith felt he could share his medical status. To prepare her, Smith said, he took his girlfriend to his job in HIV prevention at the Philadelphia Center, a northwestern Louisiana nonprofit that offers resources to people with HIV, which also provided him housing at the time.

Finally, he revealed the news: Smith was diagnosed with HIV in 1994 and started taking daily antiviral pills in 2006. The virus could no longer be detected in his blood, and he couldn’t transmit it to a sexual partner.

Smith said his girlfriend seemed comfortable knowing his status. When it came to sex, there was no hesitation, he said. But a couple of years later, when Smith wanted to break up, he said, her tone shifted.

“She was like, 鈥業f you try to leave me, I’m gonna put you in jail,’” recalled Smith, now 68. “At the time, I really didn’t know the sincerity of it.”

After they broke up, she reported him to the police, accusing him of violating a little-known law in Louisiana 鈥� a felony called “.” He disputed the allegations, but in 2013 accepted a plea deal to spend six months in prison on the charge. He had a few months left on parole from a past conviction on different charges, and Smith thought this option would let him move past the relationship faster. He didn’t realize the conviction would also land him on the state’s sex offender registry.

For nearly two decades, Smith had dealt with the stigma associated with having HIV; the registry added another layer of exclusion, severely restricting where he could live and work to avoid minors. Not many people want to hire a sex offender, he said. Smith has been told by the local sheriff’s office he’s not allowed to do simple things, like go to a public park or a high school football game, since the conviction.

“I’ve been undetectable for 15 years, but that law still punishes us,” Smith said.

Louisiana is one of 30 states with criminal penalties related to exposing or transmitting HIV. Most of the laws were passed in the 1980s during the emergence of the AIDS epidemic. Since then, several states have amended their laws to make them less punitive or repealed them outright, including Maryland and North Dakota this year.

But Louisiana’s law remains among the harshest. The state is that may require people such as Smith to register as a sex offender if convicted, a label that can follow them for over a decade. And state lawmakers considered a bill to expand the law to apply to other sexually transmitted infections, then failed to pass it before the session ended.

Meanwhile, people with HIV also face the threat that federal funding cuts will affect their access to treatment, along with prevention efforts, supportive services, and outreach. Such strategies have proved to slow the HIV/AIDS epidemic, unlike the laws’ punitive approach.

The tax and domestic policy law previously known as the “One Big Beautiful Bill” will likely affect HIV-positive people enrolled in Medicaid by reducing federal support for Medicaid and restricting eligibility. About 40% of adults under 65 with HIV rely on Medicaid.

The Trump administration to eliminate HIV prevention programs at the Centers for Disease Control and Prevention and to cancel a grant that helps fund housing for people with HIV. The Ryan White HIV/AIDS program, the largest federal fund dedicated to supporting HIV-positive people, also faces cuts. The program serves more than half of the people in the U.S. diagnosed with HIV, including in Louisiana, according to 麻豆女优, a health information nonprofit that includes 麻豆女优 Health News.

Public health officials maintain that state laws criminalizing HIV exposure hurt efforts to end the HIV epidemic. Epidemiologists and other that the enforcement of such laws is often shaped by fear, not science. For example, in many states that criminalize HIV exposure, people living with HIV can face heightened criminal penalties for actions that can’t transmit the virus, such as spitting on someone. The laws further stigmatize and deter people from getting tested and treatment, undermining response to the epidemic, experts say.

At least 4,400 people in 14 states have been arrested under these laws, though data is limited and the actual number is likely higher, and the arrests aren’t decreasing, according to analyses by .

“鈥奡ome people think it’s an issue that’s gone away, and that simply isn’t the case,” said Nathan Cisneros, a researcher at the Williams Institute.

In Louisiana, found at least 147 allegations reported to law enforcement under the state’s HIV law from 2011 to mid-2022. Black people made up nearly three-quarters of the people convicted and placed on the sex offender registry. Most were Black men, like Smith. At the time of the analysis, Black people made up about two-thirds of HIV diagnoses in the state.

“鈥奧e see over and over that Black people are disproportionately affected by the HIV epidemic and disproportionately affected by policing and incarceration in the United States,” Cisneros said.

Nationally, other marginalized groups such as women, sex workers, the queer community, or people who overlap across more than one group are also disproportionately arrested and prosecuted under similar criminalization laws, Cisneros said.

Ensnared in the System

Louisiana’s law hinges on the requirement that if a person knows they have HIV, they must disclose their HIV status and receive consent before exposing someone to the virus.

Louisiana District Attorneys Association Executive Director Zach Daniels said these cases don’t come up often and can be difficult to prosecute. Daniels said the intimate nature of the cases can lead to little evidence in support of either side, especially if the accuser doesn’t contract HIV.

When it comes to talking about one’s sex life, Daniels said, “there are often no other witnesses, besides the two participants.”

Louisiana’s law is written so that “intentional exposure” can occur through “any means or contact.” That includes sex and needle-sharing, practices known to transmit the virus. But the language of the law is so broad that actions known not to transmit the virus 鈥� like biting or scratching 鈥� could be included, said Dietz, the statewide coordinator for the Louisiana Coalition on Criminalization and Health, an advocacy network founded by people living with HIV that has opposed the law.

The broad nature of the law creates opportunities for abuse, as the threat of being reported under the law can be used as a coercive tool in relationships, said Dietz, who goes by one name and uses they/them pronouns. Such threats, Dietz said, have kept people in abusive relationships and loomed over child custody battles. Dietz said they’ve supported people accused of exposing their children to HIV in ways that are not medically possible.

“鈥娾�楢ny means or contact’ could be just merely being around your kids,” they said.

The prosecutors’ organization still supports the law as a recourse for emergency responders who, in rare instances, come into contact with blood or syringes containing the virus. In one recent , the law was used against a local DJ accused of knowingly transmitting HIV to several women without informing them of his status or using a condom.

The person accused of violating the law, not the accuser, must prove their case 鈥� that they disclosed their HIV status beforehand. Without a signed affidavit or tape recording, courts can end up basing their decisions on conflicting testimonies with little supporting evidence.

That’s what Smith alleged happened to him.

After his relationship ended, he said, he remembered being called into a meeting with his parole officer where a detective waited for him, asking about his former relationship and whether his girlfriend had known about his HIV status.

Smith said yes. But that’s not what she had told police.

Verite News could not find a working phone number for Smith’s former girlfriend but corroborated the story with the incident’s police report. His attorney at the time, a public defender named Carlos Prudhomme, said he didn’t remember much about the case, and court documents are sealed because it was a sex offense.

In court, it was her word against his. So when he was offered six months in prison instead of the 10-year maximum, he switched his plea from not guilty to guilty. But he said he didn’t know his new conviction would require him to register as a sex offender once he got out 鈥� worsening the stigma.

“When people see 鈥榮ex offender,’ the first thing that comes to their mind is rape, child molester, predator,” Smith said. “This law puts me in a category that I don’t care to be in.”

He has tried to make the most of it, despite the expense of paying fees each year to reregister. After being rejected from jobs, he started a catering business and built a loyal clientele. But he said he’s still stuck living in a poorly maintained apartment complex primarily inhabited by sex offenders.

“I understand their strategy for creating this law to prevent the spread, but it’s not helping. It’s hurting; it’s hindering. It’s destroying people’s lives instead of helping people’s lives, especially the HIV community,” he said. “They don’t care about us.”

The Case for Reform

Since 2014, there has been a nationwide effort to update or repeal state laws that criminalize HIV nondisclosure, exposure, or transmission. A dozen states have changed their laws to align more closely with modern science, and four have gotten rid of them completely in hopes of reducing stigma and improving public health outcomes, according to the .

Sean McCormick, an attorney with the center, said these changes are influenced partly by a growing body of evidence showing the laws’ negative consequences.

McCormick said the laws offer a “clear disincentive” for people to get tested for HIV. If they don’t know their status, there’s no criminal liability for transmission or exposure.

A by Centers for Disease Control and Prevention and DLH Corp. researchers found that after California updated its HIV criminalization law in 2018, respondents were more likely to get tested. Meanwhile, survey respondents in Nevada, which still had a more punitive law on the books, were less likely to get tested.

There’s no one-size-fits-all solution, McCormick said. His center works with HIV-positive people across the country to determine what legislative changes would work best in their states.

Texas was the first .

“As a person living with HIV in Texas, I’m deeply appreciative that we don’t have an HIV-specific statute that puts a target on my back,” said Michael Elizabeth, the public health policy director for the Equality Federation.

But Elizabeth points out that Texans living with HIV still face steeper penalties under general felony laws for charges such as aggravated assault or aggravated sexual assault after state courts in Texas equated the bodily fluids of a person with HIV with a “deadly weapon.”

Louisiana activists have pushed lawmakers in the state to amend the law in three ways: removing the sex offender registration requirement, requiring transmission to have occurred, and requiring clear intent to transmit the virus.

“Our strategy, as opposed to repeal, is to create a law that actually addresses the kind of boogeyman that they ostensibly created the law for: the person who successfully, maliciously, intentionally transmits HIV,” said Dietz with the Louisiana Coalition on Criminalization and Health.

In 2018, a bill to narrow the statute was amended in ways that expanded the law. For example, the updated law no longer had any definition of which actions “expose” someone to HIV.

In 2023, state lawmakers created a task force that recommended updating Louisiana’s law to align with the latest public health guidelines, limit the potential for unintended consequences, and give previously convicted people a way to clear their record.

Lawmakers in the state House pushed forward a bill this year to criminalize other sexually transmitted infections, including hepatitis B and the herpes simplex virus. That bill died in the Senate, but it spurred the creation of another legislative task force with a nearly identical mission to that of the first.

“鈥奣his state has no idea how closely we just dodged a bullet,” Dietz said.

In the meantime, the Louisiana coalition is helping Smith petition the state to take his name off the sex offender registry. Louisiana law allows people to petition to have their names removed from the registry after 10 years without any new sex crime convictions. Smith expects his case to be approved by the end of the year.

Despite the difficulty of the past 12 years, he said, he’s grateful for the chance to be free from the registry’s restrictions.

“It’s like a breath of fresh air,” Smith said. “I can do stuff that I wanted to do that I couldn’t. Like, go to a football game. Simple stuff like that, I’m going to be ready to do.”

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The decision by the Department of Health and Human Services to restore millions of dollars for the two states came as it simultaneously withheld nearly $66 million from clinics in the Title X program elsewhere. Title X for more than 50 years has provided sexual and reproductive health services especially to low-income, hard-to-reach people, including minors.

The Biden administration in 2023 to Tennessee and Oklahoma, saying they violated federal rules by not offering counseling to patients about abortion. The states sued federal health officials. And courts ruled against the states.

On March 31, HHS restored $3.1 million in family planning funds for the and nearly $2 million for the , according to court filings. In the notices, HHS said family planning funds were sent to the two states “pursuant to a settlement agreement with the recipient.”

Yet “there has been no agreement with Tennessee to settle this litigation,” Department of Justice lawyers wrote in an .

Zach West, an official with the Office of the Oklahoma Attorney General, on April 17 that the state’s grant notice “wrongly indicated that a settlement agreement had been reached. No agreement has yet been entertained or discussed in any substantial manner in this case.”

“To our knowledge no settlement has been reached between the State of Oklahoma and HHS in the pending litigation,” Erica Rankin-Riley, public information officer for the Oklahoma State Department of Health, said in an email in response to questions. She said the state’s Title X clinics are not providing referrals for abortion or counseling pregnant women about terminating pregnancies.

“We are appreciative of all that has been involved in restoring Oklahoma’s long-standing and successful Title X grant,” Rankin-Riley said, “and look forward to continuing these important services throughout the state as we have done for over 50 years.”

Spokespeople for HHS and the Tennessee Department of Health did not respond to requests for comment.

Title X was established to reduce unintended pregnancies and provide related preventive health care. As of 2023, more than 3,800 clinics across the country used federal grants to supply free or low-cost contraception, testing for sexually transmitted infections, screening for breast and cervical cancer, and pregnancy-related counseling.

Nationwide, who use Title X’s services are women, according to HHS.

Federal law prohibits clinics from using Title X money to pay for abortions. However, HHS regulations issued in 2021 say participating clinics must offer pregnant women information about prenatal care and delivery, infant care, foster care, adoption, and pregnancy termination. That includes counseling patients about abortion and providing abortion referrals on request.

HHS under President Donald Trump has not yet revised the Biden-era regulations, which means participating clinics are still required to provide abortion counseling and abortion referrals for pregnant women who request them.

After the Supreme Court’s June 2022 decision in Dobbs v. Jackson Women’s Health Organization, which ended the constitutional right to an abortion, Tennessee and Oklahoma enacted strict abortion bans with few exceptions. The states told their Title X clinics they could discuss or make referrals only for services that were legal in their states, effectively cutting off any talk about abortion.

“Continued funding is not in the best interest of the government,” officials on March 20, 2023.

Tennessee and Oklahoma subsequently sued in federal court. A three-judge panel for the U.S. Court of Appeals for the 6th Circuit ruled against Tennessee, while Oklahoma asked the Supreme Court to review the case after that state lost in the U.S. Court of Appeals for the 10th Circuit.

State officials suggested even they weren’t sure why they got some of their funding back before the lawsuits were resolved. “If Oklahoma’s award is not being restored pursuant to a settlement agreement, then what is the reason for the partial restoration, and is it permanent?” West wrote.

“Tennessee has not yet ascertained the formal position of HHS with respect to whether HHS intends to fully restore Tennessee’s Title X funding,” Whitney Hermandorfer of the Office of the Tennessee Attorney General wrote in an .

A report from HHS’ Office of Population Affairs said 60% of roughly 2.8 million patients who received Title X services in 2023 had family incomes at or below the poverty line. Twenty-seven percent were uninsured, the national uninsured rate.

In fiscal 2024, the federal government awarded Title X grants , a mix of state and local governments and private organizations. Those grantees distribute funds to public or private clinics.

The decision to restore some of Tennessee and Oklahoma’s funding diverges sharply from the approach HHS under Trump has taken with other Title X participants.

On March 31, HHS withheld family planning funds from 16 entities, including nine Planned Parenthood affiliates.

At least seven states 鈥� California, Hawaii, Maine, Mississippi, Missouri, Montana, and Utah 鈥� now do not have any Title X-funded family planning services, filed in federal court by the ACLU and the National Family Planning and Reproductive Health Association, which lobbies for Title X clinics.

Overall, 865 family planning clinics are unable to provide services to roughly 842,000 people, the lawsuit states.

“We know what happens when health care providers cannot use Title X funding: People across the country suffer, cancers go undetected, access to birth control is severely reduced, and the nation’s STI crisis worsens,” Alexis McGill Johnson, president and CEO of Planned Parenthood Action Fund, said in a statement.

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The programs are designed to cultivate a new generation of public health leaders, many of whom have gone on to work at the CDC. That was far from its only purpose. Local and state officials said the departures threaten to undermine the nation’s constant effort to identify and control infectious disease outbreaks.

The terminated CDC employees helped prevent and respond to outbreaks such as dengue fever and the flu. They worked with local officials to quickly test for viruses and ensure that testing in public health labs complies with federal regulations. Others monitored potential cases of tuberculosis or provided health education to adolescents to prevent sexually transmitted infections, according to interviews with fired workers and local public health officials.

As a CDC public health adviser, Gaël Cruanes had been working at New York City’s Department of Health and Mental Hygiene to detect cases of tuberculosis, a serious illness that spreads through the air and usually attacks the lungs.

The Public Health Associate Program deploys recent college graduates and other early-career workers for two years. After starting his job in October, Cruanes said, he contacted newly arrived immigrants and refugees potentially at risk of spreading TB in hopes of getting them into the city’s clinics for screening.

“It’s purely for the safety of the public at the end of the day,” Cruanes said. He and other trainees were fired in mid-February.

“It’s unconscionable,” he said.

A spokesperson for the Department of Health and Human Services, Andrew Nixon, declined to comment. The White House and CDC didn’t respond to requests for comment.

The Trump administration’s swift staff reductions in February targeted probationary employees, many hired in the past two years, who lack civil service protections against firings. The administration on Feb. 26 to submit plans by mid-March for large-scale layoffs, a move that could encompass a much broader swath of workers.

After CNN published this article, at least some fired CDC workers in the training programs were notified on March 4 that their terminations had been rescinded.

Affected employees were cleared to work on March 5, according to emails viewed by 麻豆女优 Health News. “You should return to duty under your previous work schedule. We apologize for any disruption that this may have caused,” said the emails, which were unsigned and sent from an internal CDC email address.

The reversal came less than a week after a federal judge ruled that the Trump administration’s widespread terminations of probationary employees were likely illegal.

Seven CDC employees 鈥� including from the associate program 鈥� assigned to the New York City health department were originally terminated, Michelle Morse, the agency’s acting commissioner, testified during a City Council hearing Feb. 19.

In an interview, Morse said the health department was exploring how to retain them.

“We’re looking into what the CDC could do,” she said, “but we are really just trying to use our own levers that we have within the health department to see what’s possible for those staff.”

Since its creation in 2007, the Public Health Associate Program has placed 1,800 people in nearly every state and territory, plus the District of Columbia, according to the CDC.

The sudden firings meant “there was no lead time to try to figure out what we’re going to do,” said Anissa Davis, the city health officer at the Long Beach Department of Health and Human Services in California.

Three participants of the associate program worked at the Long Beach department, Davis said. A CDC public health adviser was one of four employees working on sexually transmitted infections and HIV surveillance. Two others were with the 13-person communicable disease control team, which includes staff who respond to outbreaks in nursing homes, hospitals, restaurants, and schools, Davis said.

“They are invaluable,” Davis said. “Public health is always under-resourced so having these people really helps us.”

The U.S. public health system was already under severe strain at the onset of the covid-19 pandemic 鈥� tens of thousands of jobs disappeared after the 2007-09 recession hit, and spending also dropped significantly for state and local health departments, according to a 麻豆女优 Health News investigation. The backlash against pandemic-era restrictions drove many more officials to resign or retire. Others were fired. Still, officials said the pandemic also inspired some to pursue public health careers.

Scientists in the CDC’s Laboratory Leadership Service program were also fired in February. The CDC in 2015 started the two-year training fellowship to improve lab safety and quality following a series of failures, including in 2014 when CDC staff in Atlanta were potentially exposed to anthrax. The program each year recruits a small number of doctorate-level scientists; several work in state or local health departments.

At least 16 of 24 fellows in the program were fired in mid-February, according to two scientists who were terminated and spoke on the condition of anonymity for fear of professional retaliation. “Now we can’t be a resource for these labs anymore,” one of them said.

Public health labs need the CDC scientists “because they’re underfunded, understaffed,” the other said. “They are at their capacity already.”

Lab fellows’ responsibilities included helping with outbreak investigations and responses, including by training local staff on how to safely run tests or analyzing samples to identify the cause of an illness. Fellows were recently involved in setting up a new test in Florida to detect Oropouche, a relatively unknown insect-borne disease that has . The World Health Organization in December said had been reported in 2024 in South America, the Caribbean, the U.S., Europe, Canada, and Panama. The Florida Department of Health didn’t respond to a request for comment.

Fellows also helped develop the capacity to test for dengue fever in American Samoa, one of them said.

“When new stuff happens that’s urgent, it’s almost all the time we get pivoted to it,” the person said.

Participants in different training programs received the same form letter notifying them of their terminations, according to documents viewed by 麻豆女优 Health News.

The letters said that terminated people had shown poor performance: “Unfortunately, the Agency finds that you are not fit for continued employment because your ability, knowledge and skills do not fit the Agency’s current needs, and your performance has not been adequate to justify further employment at the Agency.”

However, the fellows’ supervisors had written memos and emails saying they were in good standing, according to documents viewed by 麻豆女优 Health News. Cruanes said he had not had a performance evaluation when he was terminated 鈥� his first was supposed to be Feb. 18, three days after he received his notice. He was among the CDC staff reinstated on March 4.

In Minneapolis, a CDC public health adviser had been providing sexual and reproductive health education in two high schools, as well as doing citywide work on STI testing, said Barbara Kyle, the city’s school-based clinic manager. The department was trying to shift those responsibilities to remaining personnel. “We’re right now just scrambling,” she said.

The city has relied on trainees through the CDC program for more than a decade, Kyle said.

“These two years of learning public health, on-the-ground experience, has really been such a positive move for our country,” she said. “So that concerns me if we lose that pipeline.”

Healthbeat reporter Eliza Fawcett contributed to this report from New York City.

We’d like to speak with current and former personnel from the Department of Health and Human Services or its component agencies who believe the public should understand the impact of what’s happening within the federal health bureaucracy. Please message 麻豆女优 Health News on Signal at (415) 519-8778 or .

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Years ago, Wilkins was dating a man newly diagnosed with HIV and went to get tested, she said, but was not offered PrEP.

Since then, Wilkins said, doctors either have told her she doesn’t need the drug or were reluctant to prescribe it. Her insurance through work would not cover a long-acting injectable form that tends to have better results than the original pill form. Getting to appointments across Atlanta for the pills was a challenge. She is now enrolled in a drug trial for a promising PrEP injection but worries about future access and cost.

Preexposure prophylaxis, known as PrEP, reduces the risk of new HIV infections through sex by 99% and among injectable drug users , according to the Centers for Disease Control and Prevention.

Among states, Georgia has the of new HIV infections, but residents — especially women and Black patients like Wilkins — are often not getting PrEP, data shows.

A rule enacted by the Biden administration that took effect for many Affordable Care Act plans on Jan. 1 should make it easier for people like Wilkins to get long-acting PrEP injectable drugs.

A new Trump administration adds an X factor to this and other federal health programs. On Jan. 27, the White House announced a federal funding freeze, which sent shudders through health agencies and nonprofits. By Jan. 29, it had reversed the order.

Federal initiatives like the and HIV prevention funding seemed to be affected — and “blocking access to PrEP would have deadly consequences,” said Wayne Turner, a senior attorney at the National Health Law Program.

Georgia has big in PrEP uptake, said Patrick Sullivan, who is an epidemiology professor at Emory University and leads AIDSVu and PrEPVu, which track HIV data and access to the drug — work that is backed by Gilead Sciences, a PrEP drug manufacturer.

Public health experts use what’s called a “PrEP-to-need ratio” to measure how many people at risk of HIV are getting the drug. A higher number is better. In Georgia for 2023, the statewide ratio was 6, while it was nearly 167 in Vermont, .

While the ratio for white people in Georgia was roughly 22, it was about 3 for Black people and just over 3 for Hispanic people. And while it was 7 for men, it was just over 2 for women.

“Black people generally are underserved by PrEP, and women are underserved by PrEP relative to men,” Sullivan said.

Increasing PrEP uptake would help the state cut its new HIV diagnoses, said Dylan Baker, associate medical director at Grady Health’s HIV Prevention Program.

Georgia’s rate of new HIV diagnoses was 27 per 100,000 in 2022, according to the most recent available data. That’s second only to Washington, D.C., and more than double the national rate of 13 per 100,000. That amounts to about 2,500 new cases diagnosed in Georgia in a year.

Globally about 3.5 million people used PrEP in 2023, up from 200,000 in 2017 but short of the United Nations’ 2025 target of 21.2 million people, by the United Nations Program on HIV/AIDS.

PrEP users in Atlanta report many challenges in getting the drug, including cost, medical providers who don’t prescribe it, stigma, a lack of inclusive marketing, and transportation. Wilkins said she has run up against all of those.

“Here I am telling you that I’m here to get tested because I have come into contact with someone who was living with HIV, and we had a sexual relationship, and you’re not even mentioning PrEP to me,” Wilkins said. “That was a disservice.”

Insurers Now Required To Cover PrEP

Cost has long been a barrier. The Biden administration last fall requiring most insurers to cover the full cost of all forms of PrEP, without prior authorization, along with certain lab work and other services. This includes pills as well as Apretude, an injection given every two months.

That means insured PrEP users should not face , said Carl Schmid, executive director of the , which lobbied for the rule.

It applies to those on the federal marketplace plans and most large private health plans. A similar rule exists for Medicare and Medicare Advantage plans.

Schmid said he does not think the Trump administration will repeal the rule, but he is concerned the U.S. Supreme Court could end coverage for preventive services, including PrEP, when it issues a decision in , anticipated this summer.

The rule will not help the uninsured. In Georgia, which did not expand Medicaid under the ACA, about are uninsured.

“The cost is also a struggle, especially given different people are part of the gig economy, a lot of folks don’t always have access to health insurance,” said Maximillian Boykin, an Atlanta PrEP user.

Expanding Medicaid would help. States that have done so, Sullivan said, “have higher levels of PrEP uptake.”

Winning the PrEP Lottery

Since getting on PrEP in 2019, Wilkins has encountered two doctors who did not want to prescribe it.

One female OB-GYN told her “‘Girl, at our age, we should know better.’” Wilkins said , telling her that such comments are stigmatizing.

When Wilkins moved, she looked for a nearby primary care provider so she would not have to pay for transportation to get PrEP.

But the doctor she found, Wilkins said, told her to find an infectious disease specialist for PrEP.

“‘You’re not treating an infectious disease,’ I say. ‘This is preventive care,’” Wilkins recalled.

Wilkins’ fortunes turned when she was selected to join a study for a twice-yearly injectable form of PrEP.

Lenacapavir, already approved for HIV treatment, showed promising results for HIV prevention in . Wilkins is part of a trial in Atlanta including about 250 cisgender women nationally who have sex with men.

It’s much better than a daily pill or even a shot once every two months, Wilkins said.

She hopes to stay on the drug, but the U.S. list price for lenacapavir as an HIV treatment averages about $40,000 a year.

Gilead last year announced it signed royalty-free licensing agreements with six manufacturers to make generic lenacapavir for 120 primarily low- and lower-middle-income countries.

It’s not clear where it falls with the Biden rule. “We believe it should be covered,” Schmid said, “but want the federal government to state that clearly.”

For many patients, challenges remain. Most people are willing to travel about 30 minutes for routine health care, Sullivan said, but in cities like Atlanta, those relying on public transportation may face longer commutes to PrEP providers. Some who need PrEP have unstable housing without firm mailing addresses.

Privacy is another concern. “Everybody should be able to find a place that’s comfortable,” Sullivan said. “More of that can go on in primary health care.”

Others agree that public health messaging around PrEP services should target more diverse audiences. Dázon Dixon Diallo is the founder of , an HIV, sexual, and reproductive health organization focused on Black women in the Southeast.

“You’re not going to get to us by giving us a 3-second cameo in a commercial about PrEP,” she said. “There’s no story in there for me, right?”

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Infectious disease experts from the Centers for Disease Control and Prevention made a list of recommendations following their visit, including one to launch syringe service programs to stop the spread at its source. But those who’ve spent years striving to protect people who use drugs from overdose and illness say the situation likely hasn’t improved, in part because of politicians who contend that such programs encourage illegal drug use.

Joe Solomon is a Charleston City Council member and co-director of SOAR WV, a group that works to address the health needs of people who use drugs. He’s proud of how his close-knit community has risen to this challenge but frustrated with the restraints on its efforts.

“You see a city and a county willing to get to work at a scale that’s bigger than ever before,” Solomon said, “but we still have one hand tied behind our back.”

The hand he references is easier access to clean syringes.

In April 2021, the CDC came to Charleston 鈥� the seat of Kanawha County and the state capital, tucked into the confluence of the Kanawha and Elk rivers 鈥� to investigate dozens of newly detected HIV infections. The CDC’s HIV intervention chief “the most concerning HIV outbreak in the United States” and warned that the number of reported diagnoses could be just “the tip of the iceberg.”

Now, despite attention and resources directed toward the outbreak, researchers and health workers say HIV continues to spread. In large part, they say, the outbreak lingers because of restrictions state and local policymakers have placed on syringe exchange efforts.

Research indicates that syringe service programs are associated with an estimated in HIV and hepatitis C, and the CDC to steer a response to the outbreak that emphasized the need for improved access to those services.

That advice has thus far gone unheeded by local officials.

In late 2015, the Kanawha-Charleston Health Department launched a syringe service program but in 2018 under pressure, with then-Mayor Danny Jones calling it a “mini-mall for junkies and drug dealers.”

SOAR stepped in, hosting health fairs at which it distributed naloxone, an opioid overdose reversal drug; offered treatment and referrals; provided HIV testing; and exchanged clean syringes for used ones.

But in April 2021, the limiting the number of syringes people could exchange and made it mandatory to present a West Virginia ID. The Charleston City Council subsequently added guidelines of its own, including requiring individual labeling of syringes.

As a result of these restrictions, SOAR ceased exchanging syringes. now operates an exchange program in the city under the restrictions.

Robin Pollini is a West Virginia University epidemiologist who conducts community-based research on injection drug use. “Anyone I’ve talked to who’s used that program only used it once,” she said. “And the numbers they report to the state bear that out.”

A syringe exchange in nearby Cabell County 鈥� home to Huntington, the state’s largest city after Charleston 鈥� isn’t so constrained. As Solomon notes, that program for every one exchanged in Kanawha.

A common complaint about syringe programs is that they result in discarded syringes in public spaces. Jan Rader, director of Huntington’s Mayor’s Office of Public Health and Drug Control Policy, is regularly out on the streets and said she seldom encounters discarded syringes, pointing out that it’s necessary to exchange a used syringe for a new one.

In August 2023, the Charleston City Council voted down a proposal from the to operate a syringe exchange in the city’s West Side community, with opponents expressing fears of an increase in drug use and crime.

Pollini said it’s difficult to estimate the number of people in West Virginia with HIV because there’s no coordinated strategy for testing; all efforts are localized.

“You would think that in a state that had the worst HIV outbreak in the country,” she said, “by this time we would have a statewide testing strategy.”

In addition to the testing SOAR conducted in 2021 at its health fairs, there was extensive testing during the CDC’s investigation. Since then, the reported number of HIV cases in Kanawha County , Pollini said, but it’s difficult to know if that’s the result of getting the problem under control or the result of limited testing in high-risk groups.

“My inclination is the latter,” she said, “because never in history has there been an outbreak of injection-related HIV among people who use drugs that was solved without expanding syringe services programs.”

“If you go out and look for infections,” Pollini said, “you will find them.”

Solomon and Pollini praised the ongoing outreach efforts 鈥� through riverside encampments, in abandoned houses, down county roads 鈥� of the to test those at highest risk: people known to be injecting drugs.

“It’s miracle-level work,” Solomon said.

But Christine Teague, Ryan White Program director at the Charleston Area Medical Center, acknowledged it hasn’t been enough. In addition to HIV, her concerns include the high incidence of hepatitis C and endocarditis, a life-threatening inflammation of the lining of the heart’s chambers and valves, and the cost of hospital resources needed to address them.

“We’ve presented that data to the legislature,” she said, “that it’s not just HIV, it’s all these other lengthy hospital admissions that, essentially, Medicaid is paying for. And nothing seems to penetrate.”

Frank Annie is a researcher at CAMC specializing in cardiovascular diseases, a member of the Charleston City Council, and a proponent of syringe service programs. Research he co-authored in southern West Virginia associated with injection drug use, at a cost to federal, state, and private insurers of more than $17 million, of which less than $4 million was recovered.

Teague is further concerned for West Virginia’s rural counties, most of which don’t have a syringe service program.

Tasha Withrow, a harm reduction advocate in bordering rural Putnam County, said her sense is that HIV numbers aren’t alarmingly high there but said that, with little testing and heightened stigma in a rural community, it’s difficult to know.

In a January 2022 follow-up report, the CDC recommended increasing access to harm reduction services such as syringe service programs through expansion of mobile services, street outreach, and telehealth, using “patient-trusted” individuals, to improve the delivery of essential services to people who use drugs.

Teague would like every rural county to have a mobile unit, like the one operated by her organization, offering harm reduction supplies, medication, behavioral health care, counseling, referrals, and more. That’s an expensive undertaking. She suggested opioid settlement money through the could pay for it.

Pollini said she hopes state and local officials allow the experts to do their jobs.

“I would like to see them allow us to follow the science and operate these programs the way they’re supposed to be run, and in a broader geography,” she said. “Which means that it shouldn’t be a political decision; it should be a public health decision.”

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Holt works in Aberdeen, a city of about 28,000 surrounded by a sea of prairie, as a physician and the chief medical officer for the Great Plains Area Indian Health Service, one of 12 regional divisions of the federal agency responsible for providing health care to Native Americans and Alaska Natives in the U.S.

The response to this public health issue, she said, is not so different from the approach with the coronavirus pandemic 鈥� federal, state, local, and tribal groups need to “divide and conquer” as they work to test and treat residents. But they are responding to this crisis with fewer resources because federal officials haven’t declared it a public health emergency.

The public pleas for testing are part of health officials’ efforts to halt the outbreak that has disproportionately hurt Native Americans in the Great Plains and Southwest. , syphilis rates among Native Americans in its region soared by 1,865% from 2020 to 2022 鈥� over 10 times the 154% increase seen nationally during the same period. The epidemiology center’s region spans Iowa, Nebraska, North Dakota, and South Dakota. The center also found that 1 in 40 Native American and Alaska Native babies born in the region in 2022 had a syphilis infection.

The rise in infections accelerated in 2021, pinching public health leaders still reeling from the coronavirus pandemic.

Three years later, the outbreak continues 鈥� the number of new infections so far this year is 10 times the full 12-month totals recorded in some years before the upsurge. And tribal health leaders say their calls for federal officials to declare a public health emergency have gone unheeded.

Pleas for help from local and regional tribal health leaders like Meghan Curry O’Connell, the chief public health officer for the Great Plains Tribal Leaders’ Health Board and a citizen of the Cherokee Nation, preceded a September letter from the National Indian Health Board, a Washington, D.C.-based nonprofit that advocates for health care for U.S. tribes, to to declare a public health emergency. Tribal leaders said they need federal resources including public health workers, access to data and national stockpile supplies, and funding.

According to data from the South Dakota Department of Health, have been documented this year in the state. Of those, 430 were among Native American people 鈥� making up 75% of the state’s syphilis cases, whereas the group accounts for just 9% of the population.

The numbers can be hard to process, O’Connell said.

“It’s completely preventable and curable, so something has gone horribly wrong that this has occurred,” she said.

The Great Plains Tribal Leaders’ Health Board first called on HHS to . O’Connell said the federal agency sent a letter in response outlining some resources and training it has steered toward the outbreak, but it stopped short of declaring an emergency or providing the substantial resources the board requested. The board’s now months-old plea for resources was like the recent one from the National Indian Health Board.

“We know how to address this, but we do need extra support and resources in order to do it,” she said.

Syphilis is a sexually transmitted infection that can result in life-threatening damage to the heart, brain, and other organs if left untreated. Women infected while pregnant can pass the disease to their babies. Those infections in newborns, called congenital syphilis, kill dozens of babies each year and can lead to devastating health effects in others.

Holt said the Indian Health Service facilities she oversees have averaged more than 1,300 tests for syphilis monthly. She said a recent decline in new cases detected each month 鈥� down from 92 in January to 29 in September 鈥� may be a sign that things are improving. But a lot of damage has been done during the past few years.

Cases of congenital syphilis across the country have more than tripled in recent years, according to the Centers for Disease Control and Prevention. In 2022, 鈥� the most in a single year since 1994.

The highest rate of reported primary and secondary syphilis cases in 2022 was among non-Hispanic American Indian or Alaska Native people, with 67 cases per 100,000, .

O’Connell and other tribal leaders said they don’t have the resources needed to keep pace with the outbreak.

Chief William Smith, vice president of Alaska’s Valdez Native Tribe and chairperson of the National Indian Health Board, told HHS in the organization’s letter that tribal health systems need greater federal investment so the system can better respond to public health threats.

Rafael Benavides, HHS’ deputy assistant secretary for public affairs, said the agency has received the letter sent in early September and will respond directly to the authors.

“HHS is committed to addressing the urgent syphilis crisis in American Indian and Alaska Native communities and supporting tribal leaders’ efforts to mobilize and raise awareness to address this important public health crisis,” he said.

Federal officials from the health department and the CDC and hosted workshops for tribes on how to address the outbreak. But tribal leaders insist a public health emergency declaration is needed more than anything else.

Holt said that while new cases seem to be declining, officials continue to fight further spread with what resources they have. But obstacles remain, such as convincing people without symptoms to get tested for syphilis. To make this easier, appointments are not required. When people pick up medications at a pharmacy, they receive flyers about syphilis and information about where and when to get tested.

Despite this “full court press” approach, Holt said, officials know there are people who do not seek health care often and may fall through the cracks.

O’Connell said the ongoing outbreak is a perfect example of why staffing, funding, data access, and other resources need to be in place before an emergency develops, allowing public health agencies to respond immediately.

“Our requests have been specific to this outbreak, but really, they’re needed as a foundation for whatever comes next,” she said. “Because something will come next.”

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The number of Latinos newly testing positive for HIV dropped 46% from 2022 to 2023, according to a released in July by the San Francisco Department of Public Health.

The decrease could mark the first time in five years that Latinos haven’t accounted for the largest number of new cases, leading to cautious optimism that the millions of dollars the city has spent to remedy the troubling disparity is working. But outreach workers and health care providers say that work still needs to be done to prevent, and to test, for HIV, especially among new immigrants.

“I am very hopeful, but that doesn’t mean that we’re going to let up in any way on our efforts,” said , who is the medical director of the city’s HIV and STI prevention division.

Public health experts said the city’s latest report could be encouraging, but that more data is needed to know whether San Francisco has addressed inequities in its HIV services. For instance, it’s still unclear how many Latinos were tested or if the number of Latinos exposed to the virus had also fallen 鈥� key health metrics the public health department declined to provide to 麻豆女优 Health News. Testing rates are also below pre-pandemic levels, according to the city.

“If there are fewer Latinos being reached by testing efforts despite a need, that points to a serious challenge to addressing HIV,” said Lindsey Dawson, the associate director of HIV Policy and director of LGBTQ Health Policy at 麻豆女优, a health information nonprofit that includes 麻豆女优 Health News.

San Francisco, like the rest of the country, suffers major disparities in diagnosis rates for Latinos and people of color. Outreach workers say that recent immigrants are more vulnerable to infectious diseases because they don’t know where to get tested or have a hard time navigating the health care system.

In 2022, Latinos represented 44% of new HIV cases in San Francisco, even though they accounted for only 15% of the population. Latinos’ share of new cases fell to 30% last year, while whites accounted for the largest share of new cases at 36%, according to the new report.

Cohen acknowledged a one-year decline is not enough to draw a trend, but she said targeted funding to community-based organizations may have helped lower HIV cases among Latinos. A final report is expected in the fall.

Most cities primarily depend on federal dollars to pay for HIV services, but San Francisco has an ambitious target to be the first U.S. city to eliminate HIV, and roughly half of its $44 million HIV/AIDS budget last year came from city coffers. By comparison, New Orleans, which has similar HIV rates, kicked in only $22,000 of its $13 million overall HIV/AIDS budget, according to that city’s health department.

As part of an effort to address HIV disparities among LGBTQ+ communities and people of color, San Francisco last year gave $2.1 million to three nonprofits 鈥� Instituto Familiar de la Raza, Mission Neighborhood Health Center, and San Francisco AIDS Foundation 鈥� to bolster outreach, testing, and treatment among Latinos, according to the city’s 2023 budget.

At Instituto Familiar de la Raza, which administers the contract, the funding has helped pay for HIV testing, prevention, treatment, outreach events, counseling, and immigration legal services, said Claudia Cabrera-Lara, director of the HIV program at Sí a la Vida. But ongoing funding isn’t guaranteed.

“We live with the anxiety of not knowing what is going to happen,” she said.

The public health department has commissioned a $150,000 project with Instituto Familiar de la Raza to determine how Latinos are contracting HIV, who is most at risk, and what health gaps remain. The results are expected in September.

“It could help us shape, pivot, and grow our programs in a way that makes them as effective as possible,” Cohen said.

The center of the HIV epidemic in the mid-1980s, San Francisco set a for response to the disease after building a network of HIV services for residents to get free or low-cost HIV testing, as well as treatment, regardless of health insurance or immigration status.

Although city testing data showed that new cases among Latinos declined last year, outreach workers are seeing the opposite. They say they are encountering more Latinos diagnosed with HIV while they struggle to get out information about testing and prevention 鈥� such as taking preventive medications like PrEP 鈥� especially among the young and gay immigrant communities.

San Francisco’s shows that 95 of the 213 people diagnosed at an advanced stage of the virus were foreign-born. And the diagnosis rate among Latino men was four times as high as the rate for white men, and 1.2 times that of Black men.

“It’s a tragedy,” said Carina Marquez, associate professor of medicine in the Division of HIV, Infectious Diseases, and Global Medicine at Zuckerberg San Francisco General Hospital, the city’s largest provider of HIV care. “We have such great tools to prevent HIV and to treat HIV, but we are seeing this big disparity.”

Because Latinos are the ethnicity least likely to receive care in San Francisco, outreach workers want the city to increase funding to continue to reduce HIV disparities.

The San Francisco AIDS Foundation, for instance, would like more bilingual sexual health outreach workers; it currently has four, to cover areas where Latinos have recently settled, said Jorge Zepeda, its director of Latine Health Services.

At Mission Neighborhood Health Center, which runs Clinica Esperanza, one of the largest providers of HIV care to Latinos and immigrants, the number of patients seeking treatment has jumped from about two a month to around 16 a month.

Among the challenges is getting patients connected to mental health and substance abuse bilingual services crucial to retaining them in HIV care, said Luis Carlos Ruiz Perez, the clinic’s HIV medical case manager. The clinic wants to advertise its testing and treatment services more but lacks the money.

“A lot of people don’t know what resources are available. Period,” said Liz Oates, a health systems navigator from Glide Foundation, who works on HIV prevention and testing. “So where do you start when nobody’s engaging you?”

This article was produced by 麻豆女优 Health News, which publishes , an editorially independent service of the .听

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Listen: More than 2 million Americans could benefit from PrEP, but only about a quarter of them are getting the HIV prevention medication. On Feb. 4, during WAMU’s “Health Hub,” 麻豆女优 Health News reporter Zach Dyer shared tips for overcoming common hurdles to care.

Billing mistakes. Stigma. Doctors who aren’t keeping up with the latest research. Those are just some of the hurdles that keep HIV prevention medication out of reach for many Americans.

The Centers for Disease Control and Prevention estimates more than 2 million Americans could benefit from a treatment known as PrEP, but only a quarter of them are getting a form of the drug. Zach Dyer appeared on WAMU’s “Health Hub” on Feb. 4 to share tips patients can use to avoid those pitfalls and find a doctor who knows more about PrEP.

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When Matthew Hurley was looking to take PrEP to prevent HIV, the doctor hadn’t heard of the medicine, and when he finally did prescribe PrEP, the bills sent to Hurley were expensive 鈥� and wrong. “I decided to write in because the process was really super frustrating.” At one point, Hurley asked, “Am I just going to stop this medication to stop having to deal with these coding issues and these scary bills?”

鈥� Matthew Hurley, 30, from Berkeley, California

A couple of years ago, Matthew Hurley got the kind of text people fear.

It said: “When was the last time you were STD tested?”

Someone Hurley had recently had unprotected sex with had just tested positive for HIV.

Hurley went to a clinic and got tested. “Luckily, I had not caught HIV, but it was a wake-up call,” they said.

That experience moved Hurley to seek out PrEP, shorthand for preexposure prophylaxis. The antiretroviral medication greatly reduces the chance of getting HIV, the virus that causes AIDS. The therapy is at protecting people against sexual transmission when taken as prescribed.

Hurley started PrEP and all was well for the first nine months 鈥� until their health insurance changed and they started seeing a new doctor: “When I brought PrEP up to him, he said, 鈥榃hat’s that?’ And I was like, oh boy.”

Hurley, who is a librarian, went into teaching mode. They explained that the PrEP regimen they’d been on required daily pills and lab work every three months to look out for breakthrough infections or other health issues.

Hurley was surprised they knew more about PrEP than the physician. The FDA approved the first drug, Truvada, , and Hurley lives in the San Francisco Bay Area, a place with one of the of LGBTQ+ people in the nation and a of HIV and health care activism. Hurley said older friends and acquaintances who survived the AIDS epidemic shared the horror of living through a time when there was no effective treatment or drugs for prevention. Deciding to take PrEP felt like an empowering way to protect their health and their community.

So Hurley pushed the doctor, and after the physician did his own research, he agreed to prescribe PrEP.

Hurley got the care they needed, but they had to be the expert in the exam room.

“That’s a big burden,” said Beth Oller, a family medicine physician and board member of GLMA, a national organization of LGBTQ+ and allied health care professionals focused on health equity. “You really want someone you can just go in and talk [to] about your health concerns without feeling like you are having to educate and advocate for yourself at every turn.”

Oller said many queer people have had during health care visits.

“I have a lot of patients who had not done preventive care for years because of the medical stigma,” she said.

Billing Headaches

Clearing the access hurdles to HIV prevention medicine was just the beginning. Hurley started receiving a string of bills for PrEP-related care. Blood test: $271.80. Office visit: $263.

Again, Hurley was surprised. They knew 鈥� even if the billing office didn’t 鈥� that under the most private insurance plans and Medicaid expansion programs are PrEP and ancillary services, , as preventive with no cost sharing.

The bills for doctor visits and blood draws piled up.

Hurley would appeal the bill and get a denial almost every time. Then, they would appeal again.

Hurley shared a series of appeal letters for one service, in which the billing office acknowledged that blood work had been initially incorrectly coded as diagnostic. Once that was corrected, Hurley said, the insurer paid for the service.

That might sound quick or easy to resolve, but Hurley said it took “forever to get through the process.” They dealt with at least six incorrect bills over several months. Hurley estimated they spent more than 60 hours contesting the bills.

During that time, Hurley said, the billing department “is continuing to send me emails and bills that are saying, You’re overdue. You’re overdue. You’re overdue.”

Fed up with the hassles, Hurley decided to find a health provider (and billing office) better informed about PrEP. They settled on the AIDS Healthcare Foundation. The care team there was able to discuss the pros and cons of different PrEP regimens and knew how to navigate the formulary for Hurley’s insurance.

Hurley hasn’t gotten an unexpected bill since.

But siloing sexual health care and PrEP off from primary care hasn’t been ideal.

“I have multiple organizations that I have to deal with to get my holistic health dealt with,” Hurley said.

A provider doesn’t need to be an HIV specialist, an infectious disease expert, or a physician to prescribe PrEP. The Centers for Disease Control and Prevention encourages primary care providers to treat PrEP like .

To avoid some of the headaches Hurley faced, try these tips:

1. Find out if PrEP is right for you.

The CDC estimates Americans could benefit from HIV prevention drugs, but just over a quarter of that group have been prescribed them.

“Not enough people know about PrEP, and there are a number of people who know about PrEP but do not realize it’s for them,” said Jeremiah Johnson, executive director of PrEP4All, an organization dedicated to universal access to HIV prevention and medication.

According to the CDC’s clinical guidelines, PrEP can be prescribed as part of a preventive health plan to . It’s especially recommended for people who don’t use condoms consistently, intravenous drug users who share needles, men who have sex with men, and people in relationships with partners living with HIV or whose HIV status is unclear.

The vast majority of PrEP users are men. There are big race, gender, and geographical of HIV and the populations taking the prevention medicine. For example, based on the patterns of new infection in the U.S., a group that would benefit from PrEP is cisgender Black women, whose gender identity aligns with their sex assigned at birth.

2. Don’t assume your provider knows about PrEP.

If your doctors aren’t well informed, start by . There are also clinical guidelines and information you can share with your provider. Check your state or local health department for a how-to guide for prescribing PrEP. For example, the New York State Department of Health AIDS Institute has information .

The , but many of the agency’s websites dealing with LGBTQ+ health are in flux. Under the Trump administration, some HIV/AIDS resources have been taken down from federal websites. Others now have : “This page does not reflect biological reality and therefore the Administration and this Department rejects it.”

3. Get lab work in-network.

Johnson said Hurley’s experience with billing mistakes is common. “The lab expenses in particular end up being very tricky,” Johnson said.

For example, a doctor’s office may mistakenly code the lab work required for PrEP as a instead of preventive care. Patients like Hurley can end up with a bill they shouldn’t have to pay. If your doctor’s office is making mistakes, share the from NASTAD, an association of public health officials who administer HIV and hepatitis programs.

Try to get your lab work done in-network. If the lab is out-of-network, Johnson said, it can be difficult to appeal.

If the bills keep coming, appeal them. And if you can’t resolve the dispute, Johnson said, file a complaint with the agency that regulates your insurance plan.

4. Look for ways to save.

There are different kinds of PrEP. There are lower-cost, generic versions of Truvada, for example, sold as emtricitabine/tenofovir disoproxil fumarate, often shortened to FTC/TDF. Newer PrEP drugs have list prices in the thousands of dollars. Check your insurance formulary and ask your doctor to prescribe medicine your plan will cover.

With many health care premiums dramatically increasing and millions at risk of losing Medicaid coverage, many people may go without health insurance this year. Drug manufacturers such as and have assistance programs for qualifying patients. If you have to pay out-of-pocket, prescription price comparison websites, like GoodRx, can help you find the pharmacies with the cheapest price.

5. Consider telehealth.

Telehealth is an option if you don’t live near an affirming provider or are looking for a more private way to get PrEP. In 2024, roughly 1 in 5 people on PrEP used telemedicine. Online pharmacies like and offer PrEP without an in-person appointment, and lab work can be done at home. Some telehealth options have ways to if you’re uninsured.

Telehealth can also broaden the number of doctors who are ready to prescribe PrEP. And some patients say speaking with a remote provider feels like a safer setting to talk about sexual health. “They’re in the comfort of their own bedroom or living room but can interface virtually with a provider. It can open up a lot of doors for honesty and trust,” said Alex Sheldon, executive director of GLMA.

6. Seek out affirming care.

GLMA created the , a searchable database of health care providers across the nation who identify as queer-friendly. As Hurley discovered, living in a major metro area is no guarantee your doctor is up to date on LGBTQ+ health care.

Ask locals you trust for recommendations. You might be surprised to find good options nearby.

Health Care Helpline helps you navigate the health system hurdles between you and good care. Send us your tricky question and we may tap a policy sleuth to puzzle it out.听Share your story. The crowdsourced project is a joint production of NPR and 麻豆女优 Health News.

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“I want people to not kill themselves for who they are,” said organizer Myk Mendez, a trans and two-spirit citizen of the Fort Hall Shoshone-Bannock Tribes in Idaho. “I want people to love their lives and grow old to tell their stories.”

“Two-spirit” is used by Native Americans to describe a distinct gender outside of male or female.

The conference in Elko reflects how some tribal citizens are supporting their LGTBQ+ community members as President Donald Trump rolls back protections and policies. In March, the National Indian Health Board, which represents and advocates for federally recognized Native American and Alaska Native tribes, declaring tribal sovereignty over issues affecting the Native American community’s health, including access to gender-affirming care.

The resolution calls on the federal government to preserve and expand programs that support the health and well-being of two-spirit and LGBTQ+ Native Americans. Tribes and tribal organizations are navigating how to uphold their sovereignty without jeopardizing the relationships and resources that support their communities, said Jessica Leston, the owner of the Raven Collective, a Native public health consulting group, and a member of the Ketchikan Indian Community.

In January, Trump signed an executive order recognizing 鈥� male and female 鈥� and another to terminate programs within the federal government.

describing two-spirit people was removed this year but restored following a court order. The page now has a disclaimer at the top that declares any information on it “promoting gender ideology” is “disconnected from the immutable biological reality that there are two sexes, male and female.”

Two-spirit is not a sexual orientation but refers to people of a “culturally and spiritually distinct gender exclusively recognized by Native American Nations,” according to a definition created by two-spirit elders in 2021. According to two-spirit leaders, people who did not fit into the Western binary of male and female have lived in their communities since before colonization.

Already, tribal citizens and leaders say some people have had trouble accessing gender-affirming care in recent months, with some community members being denied hormone treatments or having their medications delayed, even in places where gender-affirming care remains legal. Panic has spread, and tribal citizens have considered leaving the country.

“There is a chilling effect,” said Itai Jeffries, who is trans, nonbinary, and two-spirit, of the Occaneechi people from North Carolina, and a consultant for the Raven Collective.

Mendez said he requested hormone treatment at his local Indian Health Service clinic at the end of June and was told by his provider that the facility has had trouble receiving the treatment for patients.

Lenny Hayes, a two-spirit citizen of the Sisseton-Wahpeton Oyate in South Dakota, said the Indian Health Service clinic on the reservation also isn’t dispensing hormone treatment, though it is legal for people 18 and older. Hayes is the owner and operator of Tate Topa Consulting and provides educational training on two-spirit and LGTBQ+ Native Americans and Alaska Natives.

The National Congress of American Indians to encourage the creation of policies to protect two-spirit and LGBTQ+ communities. And the organization in 2021 to support providing gender-affirming care in Indian Health Service, tribal, and urban facilities.

The National Indian Health Board’s resolution cites homophobia and transphobia as contributing to higher rates of truancy, incarceration, self-harm, attempted suicide, and suicide among two-spirit young people. The board also lists health disparities among the broader Native LGBTQ+ population, including increased risks of anxiety, depression, and suicide.

Two-spirit and LGBTQ+ Native American and Alaska Native young people are , and sexual exploitation. In Minnesota, found that two-spirit and LGBTQ+ Native American and Alaska Native students had the highest rates of those ages 15-19 who responded “yes” to having traded sex or sexual activity for money, food, drugs, alcohol, or shelter.

Tribal leaders are also concerned that Medicaid cuts recently approved in Trump’s budget law will undercut efforts to expand testing and treatment for HIV infection in Native American communities.

The rates of HIV diagnosis among Native American and Alaska Native gay and bisexual men from 2018 to 2022, according to the Centers for Disease Control and Prevention.

Despite this increase, Native American and Alaska Native gay and bisexual men are among the groups with the least access to HIV tests outside of health care settings, such as community-based organizations, mobile testing units, and shelters.

As tribes respond to state and federal regulations of two-spirit and LGBTQ+ people, organizations and communities are focused on providing information and resources to protect those in Indian Country, even from the president.

“He will never, ever wipe out our identity, no matter what he does,” Hayes said.

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The couple waited months to have sex until Smith felt he could share his medical status. To prepare her, Smith said, he took his girlfriend to his job in HIV prevention at the Philadelphia Center, a northwestern Louisiana nonprofit that offers resources to people with HIV, which also provided him housing at the time.

Finally, he revealed the news: Smith was diagnosed with HIV in 1994 and started taking daily antiviral pills in 2006. The virus could no longer be detected in his blood, and he couldn’t transmit it to a sexual partner.

Smith said his girlfriend seemed comfortable knowing his status. When it came to sex, there was no hesitation, he said. But a couple of years later, when Smith wanted to break up, he said, her tone shifted.

“She was like, 鈥業f you try to leave me, I’m gonna put you in jail,’” recalled Smith, now 68. “At the time, I really didn’t know the sincerity of it.”

After they broke up, she reported him to the police, accusing him of violating a little-known law in Louisiana 鈥� a felony called “.” He disputed the allegations, but in 2013 accepted a plea deal to spend six months in prison on the charge. He had a few months left on parole from a past conviction on different charges, and Smith thought this option would let him move past the relationship faster. He didn’t realize the conviction would also land him on the state’s sex offender registry.

For nearly two decades, Smith had dealt with the stigma associated with having HIV; the registry added another layer of exclusion, severely restricting where he could live and work to avoid minors. Not many people want to hire a sex offender, he said. Smith has been told by the local sheriff’s office he’s not allowed to do simple things, like go to a public park or a high school football game, since the conviction.

“I’ve been undetectable for 15 years, but that law still punishes us,” Smith said.

Louisiana is one of 30 states with criminal penalties related to exposing or transmitting HIV. Most of the laws were passed in the 1980s during the emergence of the AIDS epidemic. Since then, several states have amended their laws to make them less punitive or repealed them outright, including Maryland and North Dakota this year.

But Louisiana’s law remains among the harshest. The state is that may require people such as Smith to register as a sex offender if convicted, a label that can follow them for over a decade. And state lawmakers considered a bill to expand the law to apply to other sexually transmitted infections, then failed to pass it before the session ended.

Meanwhile, people with HIV also face the threat that federal funding cuts will affect their access to treatment, along with prevention efforts, supportive services, and outreach. Such strategies have proved to slow the HIV/AIDS epidemic, unlike the laws’ punitive approach.

The tax and domestic policy law previously known as the “One Big Beautiful Bill” will likely affect HIV-positive people enrolled in Medicaid by reducing federal support for Medicaid and restricting eligibility. About 40% of adults under 65 with HIV rely on Medicaid.

The Trump administration to eliminate HIV prevention programs at the Centers for Disease Control and Prevention and to cancel a grant that helps fund housing for people with HIV. The Ryan White HIV/AIDS program, the largest federal fund dedicated to supporting HIV-positive people, also faces cuts. The program serves more than half of the people in the U.S. diagnosed with HIV, including in Louisiana, according to 麻豆女优, a health information nonprofit that includes 麻豆女优 Health News.

Public health officials maintain that state laws criminalizing HIV exposure hurt efforts to end the HIV epidemic. Epidemiologists and other that the enforcement of such laws is often shaped by fear, not science. For example, in many states that criminalize HIV exposure, people living with HIV can face heightened criminal penalties for actions that can’t transmit the virus, such as spitting on someone. The laws further stigmatize and deter people from getting tested and treatment, undermining response to the epidemic, experts say.

At least 4,400 people in 14 states have been arrested under these laws, though data is limited and the actual number is likely higher, and the arrests aren’t decreasing, according to analyses by .

“鈥奡ome people think it’s an issue that’s gone away, and that simply isn’t the case,” said Nathan Cisneros, a researcher at the Williams Institute.

In Louisiana, found at least 147 allegations reported to law enforcement under the state’s HIV law from 2011 to mid-2022. Black people made up nearly three-quarters of the people convicted and placed on the sex offender registry. Most were Black men, like Smith. At the time of the analysis, Black people made up about two-thirds of HIV diagnoses in the state.

“鈥奧e see over and over that Black people are disproportionately affected by the HIV epidemic and disproportionately affected by policing and incarceration in the United States,” Cisneros said.

Nationally, other marginalized groups such as women, sex workers, the queer community, or people who overlap across more than one group are also disproportionately arrested and prosecuted under similar criminalization laws, Cisneros said.

Ensnared in the System

Louisiana’s law hinges on the requirement that if a person knows they have HIV, they must disclose their HIV status and receive consent before exposing someone to the virus.

Louisiana District Attorneys Association Executive Director Zach Daniels said these cases don’t come up often and can be difficult to prosecute. Daniels said the intimate nature of the cases can lead to little evidence in support of either side, especially if the accuser doesn’t contract HIV.

When it comes to talking about one’s sex life, Daniels said, “there are often no other witnesses, besides the two participants.”

Louisiana’s law is written so that “intentional exposure” can occur through “any means or contact.” That includes sex and needle-sharing, practices known to transmit the virus. But the language of the law is so broad that actions known not to transmit the virus 鈥� like biting or scratching 鈥� could be included, said Dietz, the statewide coordinator for the Louisiana Coalition on Criminalization and Health, an advocacy network founded by people living with HIV that has opposed the law.

The broad nature of the law creates opportunities for abuse, as the threat of being reported under the law can be used as a coercive tool in relationships, said Dietz, who goes by one name and uses they/them pronouns. Such threats, Dietz said, have kept people in abusive relationships and loomed over child custody battles. Dietz said they’ve supported people accused of exposing their children to HIV in ways that are not medically possible.

“鈥娾�楢ny means or contact’ could be just merely being around your kids,” they said.

The prosecutors’ organization still supports the law as a recourse for emergency responders who, in rare instances, come into contact with blood or syringes containing the virus. In one recent , the law was used against a local DJ accused of knowingly transmitting HIV to several women without informing them of his status or using a condom.

The person accused of violating the law, not the accuser, must prove their case 鈥� that they disclosed their HIV status beforehand. Without a signed affidavit or tape recording, courts can end up basing their decisions on conflicting testimonies with little supporting evidence.

That’s what Smith alleged happened to him.

After his relationship ended, he said, he remembered being called into a meeting with his parole officer where a detective waited for him, asking about his former relationship and whether his girlfriend had known about his HIV status.

Smith said yes. But that’s not what she had told police.

Verite News could not find a working phone number for Smith’s former girlfriend but corroborated the story with the incident’s police report. His attorney at the time, a public defender named Carlos Prudhomme, said he didn’t remember much about the case, and court documents are sealed because it was a sex offense.

In court, it was her word against his. So when he was offered six months in prison instead of the 10-year maximum, he switched his plea from not guilty to guilty. But he said he didn’t know his new conviction would require him to register as a sex offender once he got out 鈥� worsening the stigma.

“When people see 鈥榮ex offender,’ the first thing that comes to their mind is rape, child molester, predator,” Smith said. “This law puts me in a category that I don’t care to be in.”

He has tried to make the most of it, despite the expense of paying fees each year to reregister. After being rejected from jobs, he started a catering business and built a loyal clientele. But he said he’s still stuck living in a poorly maintained apartment complex primarily inhabited by sex offenders.

“I understand their strategy for creating this law to prevent the spread, but it’s not helping. It’s hurting; it’s hindering. It’s destroying people’s lives instead of helping people’s lives, especially the HIV community,” he said. “They don’t care about us.”

The Case for Reform

Since 2014, there has been a nationwide effort to update or repeal state laws that criminalize HIV nondisclosure, exposure, or transmission. A dozen states have changed their laws to align more closely with modern science, and four have gotten rid of them completely in hopes of reducing stigma and improving public health outcomes, according to the .

Sean McCormick, an attorney with the center, said these changes are influenced partly by a growing body of evidence showing the laws’ negative consequences.

McCormick said the laws offer a “clear disincentive” for people to get tested for HIV. If they don’t know their status, there’s no criminal liability for transmission or exposure.

A by Centers for Disease Control and Prevention and DLH Corp. researchers found that after California updated its HIV criminalization law in 2018, respondents were more likely to get tested. Meanwhile, survey respondents in Nevada, which still had a more punitive law on the books, were less likely to get tested.

There’s no one-size-fits-all solution, McCormick said. His center works with HIV-positive people across the country to determine what legislative changes would work best in their states.

Texas was the first .

“As a person living with HIV in Texas, I’m deeply appreciative that we don’t have an HIV-specific statute that puts a target on my back,” said Michael Elizabeth, the public health policy director for the Equality Federation.

But Elizabeth points out that Texans living with HIV still face steeper penalties under general felony laws for charges such as aggravated assault or aggravated sexual assault after state courts in Texas equated the bodily fluids of a person with HIV with a “deadly weapon.”

Louisiana activists have pushed lawmakers in the state to amend the law in three ways: removing the sex offender registration requirement, requiring transmission to have occurred, and requiring clear intent to transmit the virus.

“Our strategy, as opposed to repeal, is to create a law that actually addresses the kind of boogeyman that they ostensibly created the law for: the person who successfully, maliciously, intentionally transmits HIV,” said Dietz with the Louisiana Coalition on Criminalization and Health.

In 2018, a bill to narrow the statute was amended in ways that expanded the law. For example, the updated law no longer had any definition of which actions “expose” someone to HIV.

In 2023, state lawmakers created a task force that recommended updating Louisiana’s law to align with the latest public health guidelines, limit the potential for unintended consequences, and give previously convicted people a way to clear their record.

Lawmakers in the state House pushed forward a bill this year to criminalize other sexually transmitted infections, including hepatitis B and the herpes simplex virus. That bill died in the Senate, but it spurred the creation of another legislative task force with a nearly identical mission to that of the first.

“鈥奣his state has no idea how closely we just dodged a bullet,” Dietz said.

In the meantime, the Louisiana coalition is helping Smith petition the state to take his name off the sex offender registry. Louisiana law allows people to petition to have their names removed from the registry after 10 years without any new sex crime convictions. Smith expects his case to be approved by the end of the year.

Despite the difficulty of the past 12 years, he said, he’s grateful for the chance to be free from the registry’s restrictions.

“It’s like a breath of fresh air,” Smith said. “I can do stuff that I wanted to do that I couldn’t. Like, go to a football game. Simple stuff like that, I’m going to be ready to do.”

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The decision by the Department of Health and Human Services to restore millions of dollars for the two states came as it simultaneously withheld nearly $66 million from clinics in the Title X program elsewhere. Title X for more than 50 years has provided sexual and reproductive health services especially to low-income, hard-to-reach people, including minors.

The Biden administration in 2023 to Tennessee and Oklahoma, saying they violated federal rules by not offering counseling to patients about abortion. The states sued federal health officials. And courts ruled against the states.

On March 31, HHS restored $3.1 million in family planning funds for the and nearly $2 million for the , according to court filings. In the notices, HHS said family planning funds were sent to the two states “pursuant to a settlement agreement with the recipient.”

Yet “there has been no agreement with Tennessee to settle this litigation,” Department of Justice lawyers wrote in an .

Zach West, an official with the Office of the Oklahoma Attorney General, on April 17 that the state’s grant notice “wrongly indicated that a settlement agreement had been reached. No agreement has yet been entertained or discussed in any substantial manner in this case.”

“To our knowledge no settlement has been reached between the State of Oklahoma and HHS in the pending litigation,” Erica Rankin-Riley, public information officer for the Oklahoma State Department of Health, said in an email in response to questions. She said the state’s Title X clinics are not providing referrals for abortion or counseling pregnant women about terminating pregnancies.

“We are appreciative of all that has been involved in restoring Oklahoma’s long-standing and successful Title X grant,” Rankin-Riley said, “and look forward to continuing these important services throughout the state as we have done for over 50 years.”

Spokespeople for HHS and the Tennessee Department of Health did not respond to requests for comment.

Title X was established to reduce unintended pregnancies and provide related preventive health care. As of 2023, more than 3,800 clinics across the country used federal grants to supply free or low-cost contraception, testing for sexually transmitted infections, screening for breast and cervical cancer, and pregnancy-related counseling.

Nationwide, who use Title X’s services are women, according to HHS.

Federal law prohibits clinics from using Title X money to pay for abortions. However, HHS regulations issued in 2021 say participating clinics must offer pregnant women information about prenatal care and delivery, infant care, foster care, adoption, and pregnancy termination. That includes counseling patients about abortion and providing abortion referrals on request.

HHS under President Donald Trump has not yet revised the Biden-era regulations, which means participating clinics are still required to provide abortion counseling and abortion referrals for pregnant women who request them.

After the Supreme Court’s June 2022 decision in Dobbs v. Jackson Women’s Health Organization, which ended the constitutional right to an abortion, Tennessee and Oklahoma enacted strict abortion bans with few exceptions. The states told their Title X clinics they could discuss or make referrals only for services that were legal in their states, effectively cutting off any talk about abortion.

“Continued funding is not in the best interest of the government,” officials on March 20, 2023.

Tennessee and Oklahoma subsequently sued in federal court. A three-judge panel for the U.S. Court of Appeals for the 6th Circuit ruled against Tennessee, while Oklahoma asked the Supreme Court to review the case after that state lost in the U.S. Court of Appeals for the 10th Circuit.

State officials suggested even they weren’t sure why they got some of their funding back before the lawsuits were resolved. “If Oklahoma’s award is not being restored pursuant to a settlement agreement, then what is the reason for the partial restoration, and is it permanent?” West wrote.

“Tennessee has not yet ascertained the formal position of HHS with respect to whether HHS intends to fully restore Tennessee’s Title X funding,” Whitney Hermandorfer of the Office of the Tennessee Attorney General wrote in an .

A report from HHS’ Office of Population Affairs said 60% of roughly 2.8 million patients who received Title X services in 2023 had family incomes at or below the poverty line. Twenty-seven percent were uninsured, the national uninsured rate.

In fiscal 2024, the federal government awarded Title X grants , a mix of state and local governments and private organizations. Those grantees distribute funds to public or private clinics.

The decision to restore some of Tennessee and Oklahoma’s funding diverges sharply from the approach HHS under Trump has taken with other Title X participants.

On March 31, HHS withheld family planning funds from 16 entities, including nine Planned Parenthood affiliates.

At least seven states 鈥� California, Hawaii, Maine, Mississippi, Missouri, Montana, and Utah 鈥� now do not have any Title X-funded family planning services, filed in federal court by the ACLU and the National Family Planning and Reproductive Health Association, which lobbies for Title X clinics.

Overall, 865 family planning clinics are unable to provide services to roughly 842,000 people, the lawsuit states.

“We know what happens when health care providers cannot use Title X funding: People across the country suffer, cancers go undetected, access to birth control is severely reduced, and the nation’s STI crisis worsens,” Alexis McGill Johnson, president and CEO of Planned Parenthood Action Fund, said in a statement.

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The programs are designed to cultivate a new generation of public health leaders, many of whom have gone on to work at the CDC. That was far from its only purpose. Local and state officials said the departures threaten to undermine the nation’s constant effort to identify and control infectious disease outbreaks.

The terminated CDC employees helped prevent and respond to outbreaks such as dengue fever and the flu. They worked with local officials to quickly test for viruses and ensure that testing in public health labs complies with federal regulations. Others monitored potential cases of tuberculosis or provided health education to adolescents to prevent sexually transmitted infections, according to interviews with fired workers and local public health officials.

As a CDC public health adviser, Gaël Cruanes had been working at New York City’s Department of Health and Mental Hygiene to detect cases of tuberculosis, a serious illness that spreads through the air and usually attacks the lungs.

The Public Health Associate Program deploys recent college graduates and other early-career workers for two years. After starting his job in October, Cruanes said, he contacted newly arrived immigrants and refugees potentially at risk of spreading TB in hopes of getting them into the city’s clinics for screening.

“It’s purely for the safety of the public at the end of the day,” Cruanes said. He and other trainees were fired in mid-February.

“It’s unconscionable,” he said.

A spokesperson for the Department of Health and Human Services, Andrew Nixon, declined to comment. The White House and CDC didn’t respond to requests for comment.

The Trump administration’s swift staff reductions in February targeted probationary employees, many hired in the past two years, who lack civil service protections against firings. The administration on Feb. 26 to submit plans by mid-March for large-scale layoffs, a move that could encompass a much broader swath of workers.

After CNN published this article, at least some fired CDC workers in the training programs were notified on March 4 that their terminations had been rescinded.

Affected employees were cleared to work on March 5, according to emails viewed by 麻豆女优 Health News. “You should return to duty under your previous work schedule. We apologize for any disruption that this may have caused,” said the emails, which were unsigned and sent from an internal CDC email address.

The reversal came less than a week after a federal judge ruled that the Trump administration’s widespread terminations of probationary employees were likely illegal.

Seven CDC employees 鈥� including from the associate program 鈥� assigned to the New York City health department were originally terminated, Michelle Morse, the agency’s acting commissioner, testified during a City Council hearing Feb. 19.

In an interview, Morse said the health department was exploring how to retain them.

“We’re looking into what the CDC could do,” she said, “but we are really just trying to use our own levers that we have within the health department to see what’s possible for those staff.”

Since its creation in 2007, the Public Health Associate Program has placed 1,800 people in nearly every state and territory, plus the District of Columbia, according to the CDC.

The sudden firings meant “there was no lead time to try to figure out what we’re going to do,” said Anissa Davis, the city health officer at the Long Beach Department of Health and Human Services in California.

Three participants of the associate program worked at the Long Beach department, Davis said. A CDC public health adviser was one of four employees working on sexually transmitted infections and HIV surveillance. Two others were with the 13-person communicable disease control team, which includes staff who respond to outbreaks in nursing homes, hospitals, restaurants, and schools, Davis said.

“They are invaluable,” Davis said. “Public health is always under-resourced so having these people really helps us.”

The U.S. public health system was already under severe strain at the onset of the covid-19 pandemic 鈥� tens of thousands of jobs disappeared after the 2007-09 recession hit, and spending also dropped significantly for state and local health departments, according to a 麻豆女优 Health News investigation. The backlash against pandemic-era restrictions drove many more officials to resign or retire. Others were fired. Still, officials said the pandemic also inspired some to pursue public health careers.

Scientists in the CDC’s Laboratory Leadership Service program were also fired in February. The CDC in 2015 started the two-year training fellowship to improve lab safety and quality following a series of failures, including in 2014 when CDC staff in Atlanta were potentially exposed to anthrax. The program each year recruits a small number of doctorate-level scientists; several work in state or local health departments.

At least 16 of 24 fellows in the program were fired in mid-February, according to two scientists who were terminated and spoke on the condition of anonymity for fear of professional retaliation. “Now we can’t be a resource for these labs anymore,” one of them said.

Public health labs need the CDC scientists “because they’re underfunded, understaffed,” the other said. “They are at their capacity already.”

Lab fellows’ responsibilities included helping with outbreak investigations and responses, including by training local staff on how to safely run tests or analyzing samples to identify the cause of an illness. Fellows were recently involved in setting up a new test in Florida to detect Oropouche, a relatively unknown insect-borne disease that has . The World Health Organization in December said had been reported in 2024 in South America, the Caribbean, the U.S., Europe, Canada, and Panama. The Florida Department of Health didn’t respond to a request for comment.

Fellows also helped develop the capacity to test for dengue fever in American Samoa, one of them said.

“When new stuff happens that’s urgent, it’s almost all the time we get pivoted to it,” the person said.

Participants in different training programs received the same form letter notifying them of their terminations, according to documents viewed by 麻豆女优 Health News.

The letters said that terminated people had shown poor performance: “Unfortunately, the Agency finds that you are not fit for continued employment because your ability, knowledge and skills do not fit the Agency’s current needs, and your performance has not been adequate to justify further employment at the Agency.”

However, the fellows’ supervisors had written memos and emails saying they were in good standing, according to documents viewed by 麻豆女优 Health News. Cruanes said he had not had a performance evaluation when he was terminated 鈥� his first was supposed to be Feb. 18, three days after he received his notice. He was among the CDC staff reinstated on March 4.

In Minneapolis, a CDC public health adviser had been providing sexual and reproductive health education in two high schools, as well as doing citywide work on STI testing, said Barbara Kyle, the city’s school-based clinic manager. The department was trying to shift those responsibilities to remaining personnel. “We’re right now just scrambling,” she said.

The city has relied on trainees through the CDC program for more than a decade, Kyle said.

“These two years of learning public health, on-the-ground experience, has really been such a positive move for our country,” she said. “So that concerns me if we lose that pipeline.”

Healthbeat reporter Eliza Fawcett contributed to this report from New York City.

We’d like to speak with current and former personnel from the Department of Health and Human Services or its component agencies who believe the public should understand the impact of what’s happening within the federal health bureaucracy. Please message 麻豆女优 Health News on Signal at (415) 519-8778 or .

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Years ago, Wilkins was dating a man newly diagnosed with HIV and went to get tested, she said, but was not offered PrEP.

Since then, Wilkins said, doctors either have told her she doesn’t need the drug or were reluctant to prescribe it. Her insurance through work would not cover a long-acting injectable form that tends to have better results than the original pill form. Getting to appointments across Atlanta for the pills was a challenge. She is now enrolled in a drug trial for a promising PrEP injection but worries about future access and cost.

Preexposure prophylaxis, known as PrEP, reduces the risk of new HIV infections through sex by 99% and among injectable drug users , according to the Centers for Disease Control and Prevention.

Among states, Georgia has the of new HIV infections, but residents — especially women and Black patients like Wilkins — are often not getting PrEP, data shows.

A rule enacted by the Biden administration that took effect for many Affordable Care Act plans on Jan. 1 should make it easier for people like Wilkins to get long-acting PrEP injectable drugs.

A new Trump administration adds an X factor to this and other federal health programs. On Jan. 27, the White House announced a federal funding freeze, which sent shudders through health agencies and nonprofits. By Jan. 29, it had reversed the order.

Federal initiatives like the and HIV prevention funding seemed to be affected — and “blocking access to PrEP would have deadly consequences,” said Wayne Turner, a senior attorney at the National Health Law Program.

Georgia has big in PrEP uptake, said Patrick Sullivan, who is an epidemiology professor at Emory University and leads AIDSVu and PrEPVu, which track HIV data and access to the drug — work that is backed by Gilead Sciences, a PrEP drug manufacturer.

Public health experts use what’s called a “PrEP-to-need ratio” to measure how many people at risk of HIV are getting the drug. A higher number is better. In Georgia for 2023, the statewide ratio was 6, while it was nearly 167 in Vermont, .

While the ratio for white people in Georgia was roughly 22, it was about 3 for Black people and just over 3 for Hispanic people. And while it was 7 for men, it was just over 2 for women.

“Black people generally are underserved by PrEP, and women are underserved by PrEP relative to men,” Sullivan said.

Increasing PrEP uptake would help the state cut its new HIV diagnoses, said Dylan Baker, associate medical director at Grady Health’s HIV Prevention Program.

Georgia’s rate of new HIV diagnoses was 27 per 100,000 in 2022, according to the most recent available data. That’s second only to Washington, D.C., and more than double the national rate of 13 per 100,000. That amounts to about 2,500 new cases diagnosed in Georgia in a year.

Globally about 3.5 million people used PrEP in 2023, up from 200,000 in 2017 but short of the United Nations’ 2025 target of 21.2 million people, by the United Nations Program on HIV/AIDS.

PrEP users in Atlanta report many challenges in getting the drug, including cost, medical providers who don’t prescribe it, stigma, a lack of inclusive marketing, and transportation. Wilkins said she has run up against all of those.

“Here I am telling you that I’m here to get tested because I have come into contact with someone who was living with HIV, and we had a sexual relationship, and you’re not even mentioning PrEP to me,” Wilkins said. “That was a disservice.”

Insurers Now Required To Cover PrEP

Cost has long been a barrier. The Biden administration last fall requiring most insurers to cover the full cost of all forms of PrEP, without prior authorization, along with certain lab work and other services. This includes pills as well as Apretude, an injection given every two months.

That means insured PrEP users should not face , said Carl Schmid, executive director of the , which lobbied for the rule.

It applies to those on the federal marketplace plans and most large private health plans. A similar rule exists for Medicare and Medicare Advantage plans.

Schmid said he does not think the Trump administration will repeal the rule, but he is concerned the U.S. Supreme Court could end coverage for preventive services, including PrEP, when it issues a decision in , anticipated this summer.

The rule will not help the uninsured. In Georgia, which did not expand Medicaid under the ACA, about are uninsured.

“The cost is also a struggle, especially given different people are part of the gig economy, a lot of folks don’t always have access to health insurance,” said Maximillian Boykin, an Atlanta PrEP user.

Expanding Medicaid would help. States that have done so, Sullivan said, “have higher levels of PrEP uptake.”

Winning the PrEP Lottery

Since getting on PrEP in 2019, Wilkins has encountered two doctors who did not want to prescribe it.

One female OB-GYN told her “‘Girl, at our age, we should know better.’” Wilkins said , telling her that such comments are stigmatizing.

When Wilkins moved, she looked for a nearby primary care provider so she would not have to pay for transportation to get PrEP.

But the doctor she found, Wilkins said, told her to find an infectious disease specialist for PrEP.

“‘You’re not treating an infectious disease,’ I say. ‘This is preventive care,’” Wilkins recalled.

Wilkins’ fortunes turned when she was selected to join a study for a twice-yearly injectable form of PrEP.

Lenacapavir, already approved for HIV treatment, showed promising results for HIV prevention in . Wilkins is part of a trial in Atlanta including about 250 cisgender women nationally who have sex with men.

It’s much better than a daily pill or even a shot once every two months, Wilkins said.

She hopes to stay on the drug, but the U.S. list price for lenacapavir as an HIV treatment averages about $40,000 a year.

Gilead last year announced it signed royalty-free licensing agreements with six manufacturers to make generic lenacapavir for 120 primarily low- and lower-middle-income countries.

It’s not clear where it falls with the Biden rule. “We believe it should be covered,” Schmid said, “but want the federal government to state that clearly.”

For many patients, challenges remain. Most people are willing to travel about 30 minutes for routine health care, Sullivan said, but in cities like Atlanta, those relying on public transportation may face longer commutes to PrEP providers. Some who need PrEP have unstable housing without firm mailing addresses.

Privacy is another concern. “Everybody should be able to find a place that’s comfortable,” Sullivan said. “More of that can go on in primary health care.”

Others agree that public health messaging around PrEP services should target more diverse audiences. Dázon Dixon Diallo is the founder of , an HIV, sexual, and reproductive health organization focused on Black women in the Southeast.

“You’re not going to get to us by giving us a 3-second cameo in a commercial about PrEP,” she said. “There’s no story in there for me, right?”

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Infectious disease experts from the Centers for Disease Control and Prevention made a list of recommendations following their visit, including one to launch syringe service programs to stop the spread at its source. But those who’ve spent years striving to protect people who use drugs from overdose and illness say the situation likely hasn’t improved, in part because of politicians who contend that such programs encourage illegal drug use.

Joe Solomon is a Charleston City Council member and co-director of SOAR WV, a group that works to address the health needs of people who use drugs. He’s proud of how his close-knit community has risen to this challenge but frustrated with the restraints on its efforts.

“You see a city and a county willing to get to work at a scale that’s bigger than ever before,” Solomon said, “but we still have one hand tied behind our back.”

The hand he references is easier access to clean syringes.

In April 2021, the CDC came to Charleston 鈥� the seat of Kanawha County and the state capital, tucked into the confluence of the Kanawha and Elk rivers 鈥� to investigate dozens of newly detected HIV infections. The CDC’s HIV intervention chief “the most concerning HIV outbreak in the United States” and warned that the number of reported diagnoses could be just “the tip of the iceberg.”

Now, despite attention and resources directed toward the outbreak, researchers and health workers say HIV continues to spread. In large part, they say, the outbreak lingers because of restrictions state and local policymakers have placed on syringe exchange efforts.

Research indicates that syringe service programs are associated with an estimated in HIV and hepatitis C, and the CDC to steer a response to the outbreak that emphasized the need for improved access to those services.

That advice has thus far gone unheeded by local officials.

In late 2015, the Kanawha-Charleston Health Department launched a syringe service program but in 2018 under pressure, with then-Mayor Danny Jones calling it a “mini-mall for junkies and drug dealers.”

SOAR stepped in, hosting health fairs at which it distributed naloxone, an opioid overdose reversal drug; offered treatment and referrals; provided HIV testing; and exchanged clean syringes for used ones.

But in April 2021, the limiting the number of syringes people could exchange and made it mandatory to present a West Virginia ID. The Charleston City Council subsequently added guidelines of its own, including requiring individual labeling of syringes.

As a result of these restrictions, SOAR ceased exchanging syringes. now operates an exchange program in the city under the restrictions.

Robin Pollini is a West Virginia University epidemiologist who conducts community-based research on injection drug use. “Anyone I’ve talked to who’s used that program only used it once,” she said. “And the numbers they report to the state bear that out.”

A syringe exchange in nearby Cabell County 鈥� home to Huntington, the state’s largest city after Charleston 鈥� isn’t so constrained. As Solomon notes, that program for every one exchanged in Kanawha.

A common complaint about syringe programs is that they result in discarded syringes in public spaces. Jan Rader, director of Huntington’s Mayor’s Office of Public Health and Drug Control Policy, is regularly out on the streets and said she seldom encounters discarded syringes, pointing out that it’s necessary to exchange a used syringe for a new one.

In August 2023, the Charleston City Council voted down a proposal from the to operate a syringe exchange in the city’s West Side community, with opponents expressing fears of an increase in drug use and crime.

Pollini said it’s difficult to estimate the number of people in West Virginia with HIV because there’s no coordinated strategy for testing; all efforts are localized.

“You would think that in a state that had the worst HIV outbreak in the country,” she said, “by this time we would have a statewide testing strategy.”

In addition to the testing SOAR conducted in 2021 at its health fairs, there was extensive testing during the CDC’s investigation. Since then, the reported number of HIV cases in Kanawha County , Pollini said, but it’s difficult to know if that’s the result of getting the problem under control or the result of limited testing in high-risk groups.

“My inclination is the latter,” she said, “because never in history has there been an outbreak of injection-related HIV among people who use drugs that was solved without expanding syringe services programs.”

“If you go out and look for infections,” Pollini said, “you will find them.”

Solomon and Pollini praised the ongoing outreach efforts 鈥� through riverside encampments, in abandoned houses, down county roads 鈥� of the to test those at highest risk: people known to be injecting drugs.

“It’s miracle-level work,” Solomon said.

But Christine Teague, Ryan White Program director at the Charleston Area Medical Center, acknowledged it hasn’t been enough. In addition to HIV, her concerns include the high incidence of hepatitis C and endocarditis, a life-threatening inflammation of the lining of the heart’s chambers and valves, and the cost of hospital resources needed to address them.

“We’ve presented that data to the legislature,” she said, “that it’s not just HIV, it’s all these other lengthy hospital admissions that, essentially, Medicaid is paying for. And nothing seems to penetrate.”

Frank Annie is a researcher at CAMC specializing in cardiovascular diseases, a member of the Charleston City Council, and a proponent of syringe service programs. Research he co-authored in southern West Virginia associated with injection drug use, at a cost to federal, state, and private insurers of more than $17 million, of which less than $4 million was recovered.

Teague is further concerned for West Virginia’s rural counties, most of which don’t have a syringe service program.

Tasha Withrow, a harm reduction advocate in bordering rural Putnam County, said her sense is that HIV numbers aren’t alarmingly high there but said that, with little testing and heightened stigma in a rural community, it’s difficult to know.

In a January 2022 follow-up report, the CDC recommended increasing access to harm reduction services such as syringe service programs through expansion of mobile services, street outreach, and telehealth, using “patient-trusted” individuals, to improve the delivery of essential services to people who use drugs.

Teague would like every rural county to have a mobile unit, like the one operated by her organization, offering harm reduction supplies, medication, behavioral health care, counseling, referrals, and more. That’s an expensive undertaking. She suggested opioid settlement money through the could pay for it.

Pollini said she hopes state and local officials allow the experts to do their jobs.

“I would like to see them allow us to follow the science and operate these programs the way they’re supposed to be run, and in a broader geography,” she said. “Which means that it shouldn’t be a political decision; it should be a public health decision.”

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Holt works in Aberdeen, a city of about 28,000 surrounded by a sea of prairie, as a physician and the chief medical officer for the Great Plains Area Indian Health Service, one of 12 regional divisions of the federal agency responsible for providing health care to Native Americans and Alaska Natives in the U.S.

The response to this public health issue, she said, is not so different from the approach with the coronavirus pandemic 鈥� federal, state, local, and tribal groups need to “divide and conquer” as they work to test and treat residents. But they are responding to this crisis with fewer resources because federal officials haven’t declared it a public health emergency.

The public pleas for testing are part of health officials’ efforts to halt the outbreak that has disproportionately hurt Native Americans in the Great Plains and Southwest. , syphilis rates among Native Americans in its region soared by 1,865% from 2020 to 2022 鈥� over 10 times the 154% increase seen nationally during the same period. The epidemiology center’s region spans Iowa, Nebraska, North Dakota, and South Dakota. The center also found that 1 in 40 Native American and Alaska Native babies born in the region in 2022 had a syphilis infection.

The rise in infections accelerated in 2021, pinching public health leaders still reeling from the coronavirus pandemic.

Three years later, the outbreak continues 鈥� the number of new infections so far this year is 10 times the full 12-month totals recorded in some years before the upsurge. And tribal health leaders say their calls for federal officials to declare a public health emergency have gone unheeded.

Pleas for help from local and regional tribal health leaders like Meghan Curry O’Connell, the chief public health officer for the Great Plains Tribal Leaders’ Health Board and a citizen of the Cherokee Nation, preceded a September letter from the National Indian Health Board, a Washington, D.C.-based nonprofit that advocates for health care for U.S. tribes, to to declare a public health emergency. Tribal leaders said they need federal resources including public health workers, access to data and national stockpile supplies, and funding.

According to data from the South Dakota Department of Health, have been documented this year in the state. Of those, 430 were among Native American people 鈥� making up 75% of the state’s syphilis cases, whereas the group accounts for just 9% of the population.

The numbers can be hard to process, O’Connell said.

“It’s completely preventable and curable, so something has gone horribly wrong that this has occurred,” she said.

The Great Plains Tribal Leaders’ Health Board first called on HHS to . O’Connell said the federal agency sent a letter in response outlining some resources and training it has steered toward the outbreak, but it stopped short of declaring an emergency or providing the substantial resources the board requested. The board’s now months-old plea for resources was like the recent one from the National Indian Health Board.

“We know how to address this, but we do need extra support and resources in order to do it,” she said.

Syphilis is a sexually transmitted infection that can result in life-threatening damage to the heart, brain, and other organs if left untreated. Women infected while pregnant can pass the disease to their babies. Those infections in newborns, called congenital syphilis, kill dozens of babies each year and can lead to devastating health effects in others.

Holt said the Indian Health Service facilities she oversees have averaged more than 1,300 tests for syphilis monthly. She said a recent decline in new cases detected each month 鈥� down from 92 in January to 29 in September 鈥� may be a sign that things are improving. But a lot of damage has been done during the past few years.

Cases of congenital syphilis across the country have more than tripled in recent years, according to the Centers for Disease Control and Prevention. In 2022, 鈥� the most in a single year since 1994.

The highest rate of reported primary and secondary syphilis cases in 2022 was among non-Hispanic American Indian or Alaska Native people, with 67 cases per 100,000, .

O’Connell and other tribal leaders said they don’t have the resources needed to keep pace with the outbreak.

Chief William Smith, vice president of Alaska’s Valdez Native Tribe and chairperson of the National Indian Health Board, told HHS in the organization’s letter that tribal health systems need greater federal investment so the system can better respond to public health threats.

Rafael Benavides, HHS’ deputy assistant secretary for public affairs, said the agency has received the letter sent in early September and will respond directly to the authors.

“HHS is committed to addressing the urgent syphilis crisis in American Indian and Alaska Native communities and supporting tribal leaders’ efforts to mobilize and raise awareness to address this important public health crisis,” he said.

Federal officials from the health department and the CDC and hosted workshops for tribes on how to address the outbreak. But tribal leaders insist a public health emergency declaration is needed more than anything else.

Holt said that while new cases seem to be declining, officials continue to fight further spread with what resources they have. But obstacles remain, such as convincing people without symptoms to get tested for syphilis. To make this easier, appointments are not required. When people pick up medications at a pharmacy, they receive flyers about syphilis and information about where and when to get tested.

Despite this “full court press” approach, Holt said, officials know there are people who do not seek health care often and may fall through the cracks.

O’Connell said the ongoing outbreak is a perfect example of why staffing, funding, data access, and other resources need to be in place before an emergency develops, allowing public health agencies to respond immediately.

“Our requests have been specific to this outbreak, but really, they’re needed as a foundation for whatever comes next,” she said. “Because something will come next.”

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The number of Latinos newly testing positive for HIV dropped 46% from 2022 to 2023, according to a released in July by the San Francisco Department of Public Health.

The decrease could mark the first time in five years that Latinos haven’t accounted for the largest number of new cases, leading to cautious optimism that the millions of dollars the city has spent to remedy the troubling disparity is working. But outreach workers and health care providers say that work still needs to be done to prevent, and to test, for HIV, especially among new immigrants.

“I am very hopeful, but that doesn’t mean that we’re going to let up in any way on our efforts,” said , who is the medical director of the city’s HIV and STI prevention division.

Public health experts said the city’s latest report could be encouraging, but that more data is needed to know whether San Francisco has addressed inequities in its HIV services. For instance, it’s still unclear how many Latinos were tested or if the number of Latinos exposed to the virus had also fallen 鈥� key health metrics the public health department declined to provide to 麻豆女优 Health News. Testing rates are also below pre-pandemic levels, according to the city.

“If there are fewer Latinos being reached by testing efforts despite a need, that points to a serious challenge to addressing HIV,” said Lindsey Dawson, the associate director of HIV Policy and director of LGBTQ Health Policy at 麻豆女优, a health information nonprofit that includes 麻豆女优 Health News.

San Francisco, like the rest of the country, suffers major disparities in diagnosis rates for Latinos and people of color. Outreach workers say that recent immigrants are more vulnerable to infectious diseases because they don’t know where to get tested or have a hard time navigating the health care system.

In 2022, Latinos represented 44% of new HIV cases in San Francisco, even though they accounted for only 15% of the population. Latinos’ share of new cases fell to 30% last year, while whites accounted for the largest share of new cases at 36%, according to the new report.

Cohen acknowledged a one-year decline is not enough to draw a trend, but she said targeted funding to community-based organizations may have helped lower HIV cases among Latinos. A final report is expected in the fall.

Most cities primarily depend on federal dollars to pay for HIV services, but San Francisco has an ambitious target to be the first U.S. city to eliminate HIV, and roughly half of its $44 million HIV/AIDS budget last year came from city coffers. By comparison, New Orleans, which has similar HIV rates, kicked in only $22,000 of its $13 million overall HIV/AIDS budget, according to that city’s health department.

As part of an effort to address HIV disparities among LGBTQ+ communities and people of color, San Francisco last year gave $2.1 million to three nonprofits 鈥� Instituto Familiar de la Raza, Mission Neighborhood Health Center, and San Francisco AIDS Foundation 鈥� to bolster outreach, testing, and treatment among Latinos, according to the city’s 2023 budget.

At Instituto Familiar de la Raza, which administers the contract, the funding has helped pay for HIV testing, prevention, treatment, outreach events, counseling, and immigration legal services, said Claudia Cabrera-Lara, director of the HIV program at Sí a la Vida. But ongoing funding isn’t guaranteed.

“We live with the anxiety of not knowing what is going to happen,” she said.

The public health department has commissioned a $150,000 project with Instituto Familiar de la Raza to determine how Latinos are contracting HIV, who is most at risk, and what health gaps remain. The results are expected in September.

“It could help us shape, pivot, and grow our programs in a way that makes them as effective as possible,” Cohen said.

The center of the HIV epidemic in the mid-1980s, San Francisco set a for response to the disease after building a network of HIV services for residents to get free or low-cost HIV testing, as well as treatment, regardless of health insurance or immigration status.

Although city testing data showed that new cases among Latinos declined last year, outreach workers are seeing the opposite. They say they are encountering more Latinos diagnosed with HIV while they struggle to get out information about testing and prevention 鈥� such as taking preventive medications like PrEP 鈥� especially among the young and gay immigrant communities.

San Francisco’s shows that 95 of the 213 people diagnosed at an advanced stage of the virus were foreign-born. And the diagnosis rate among Latino men was four times as high as the rate for white men, and 1.2 times that of Black men.

“It’s a tragedy,” said Carina Marquez, associate professor of medicine in the Division of HIV, Infectious Diseases, and Global Medicine at Zuckerberg San Francisco General Hospital, the city’s largest provider of HIV care. “We have such great tools to prevent HIV and to treat HIV, but we are seeing this big disparity.”

Because Latinos are the ethnicity least likely to receive care in San Francisco, outreach workers want the city to increase funding to continue to reduce HIV disparities.

The San Francisco AIDS Foundation, for instance, would like more bilingual sexual health outreach workers; it currently has four, to cover areas where Latinos have recently settled, said Jorge Zepeda, its director of Latine Health Services.

At Mission Neighborhood Health Center, which runs Clinica Esperanza, one of the largest providers of HIV care to Latinos and immigrants, the number of patients seeking treatment has jumped from about two a month to around 16 a month.

Among the challenges is getting patients connected to mental health and substance abuse bilingual services crucial to retaining them in HIV care, said Luis Carlos Ruiz Perez, the clinic’s HIV medical case manager. The clinic wants to advertise its testing and treatment services more but lacks the money.

“A lot of people don’t know what resources are available. Period,” said Liz Oates, a health systems navigator from Glide Foundation, who works on HIV prevention and testing. “So where do you start when nobody’s engaging you?”

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