In October 1995, George Kerr III tested positive for HIV. “I was terrified,” he remembers. “I thought my life was over.” That year, more than 50,000 people in the United States died from AIDS, the disease that ravages the body when the human immunodeficiency virus goes unchecked. It was the highest number of AIDS deaths the United States would experience in a single year.
Kerr was 29 at the time. He started treatment and suffered through nausea, diarrhea and night sweats. Sometimes, the medication made him pass out. “At one time I was taking 27 pills a day,” Kerr says, some with meals, some without. The regimen was so disruptive, sometimes he didn’t take his medications as prescribed.
Today, he takes only three pills a day to keep the virus under control. “It’s easier,” Kerr says. There are even one-pill formulations that combine the drugs necessary to treat HIV. The many available drugs — collectively called antiretroviral therapy, or ART — do more than cut down on pills and side effects. ART is also a kind of prevention (SN Online: 7/12/16). There is no cure for HIV, but a person consistently taking ART can almost make HIV disappear. The virus’s presence in the blood becomes so vanishingly small that the virus can’t be transmitted sexually. The concept is called undetectable = untransmittable, or U=U, and it has changed everything.
People with HIV who stick to their medications no longer have to fear passing the virus to a sexual partner. “The person that I am seeing today is HIV-negative,” says Kerr, a community activist in Washington, D.C. “I know without a doubt that I will not be infecting him.” With U=U, he says, HIV-positive people “can have the same dreams and goals as any other person in the world.”
People who are HIV-negative also have a prevention option in pre-exposure prophylaxis, or PrEP, a combination of antiretroviral drugs that can ward off an infection. Taken regularly, PrEP, sold as Truvada, is highly effective at preventing new infections in those at risk of exposure to HIV (SN: 11/14/15, p. 14). In October, the U.S. Food and Drug Administration approved a new PrEP option, called Descovy, but only for certain populations.
If everyone who needs treatment and preventive medicines could take these drugs, “you can theoretically end the epidemic as we know it, and that is our goal,” Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases in Bethesda, Md., said during a February news briefing about a new federal initiative against HIV.
But the medications can’t subdue HIV while sitting on a shelf. The hard work of taming the epidemic comes in reaching everyone who is positive or at risk, and there are still formidable barriers to surmount. Many people can’t access medical care, due to poverty or homelessness. The HIV epidemic in the United States hits some groups harder than others. Men who have sex with men account for the majority of new diagnoses, and black and Latino men in this group bear the brunt. Among women who have heterosexual sex, black women are affected more than others.
And stigma around HIV has not subsided. “A lot of people that I’ve known, unfortunately, have been thrown away” by their family, friends or church community “just because they’re now positive,” says Derrick “Strawberry” Cox, who mentors people dealing with a new HIV diagnosis in Washington, D.C.
The nation’s capital has one of the highest rates of new HIV diagnoses in the country, at 46.3 per 100,000 people in 2017, according to the U.S. Centers for Disease Control and Prevention. The city is home to Whitman-Walker Health, a nonprofit health center that has been providing HIV care since the 1980s, when the AIDS crisis first emerged in the United States. The day-to-day HIV outreach and care offered in the city demonstrate the successes and the challenges of making HIV treatment and prevention available to all who need it.
“We have the science, we have the medications,” says Amanda Castel, an HIV medical epidemiologist at the George Washington University Milken Institute School of Public Health in Washington, D.C. “We know what we need to do, but we have to get people to come in the door and stay in the door.”
It’s a breezy spring day at a busy street corner in Washington, D.C., and the pamphlets won’t stay put. Community health educator Miguel Mejia and two colleagues from Whitman-Walker are stationed here for a free HIV testing event. Mejia occasionally chases after the soaring papers, which provide information on safe sex practices, PrEP and HIV.
As soon as Mejia and colleagues set up their table in front of the mobile clinic and lay out free samples, people approach. A group of young men help themselves to condoms. A young woman stops to take an HIV test, then a young man. An older man picks up an oversized, bright blue capsule-shaped key chain. “What’s this?” he asks. The metal capsule is a convenient way to carry PrEP pills, he learns. It’s also a conversation starter, a way for Mejia and the other educators to connect with people.
In 2018, 12,322 D.C. residents, or 1.8 percent of the population, were HIV-positive. An estimated 78 percent of those living with HIV were in treatment, and of that group, 85 percent were undetectable, according to the city’s 2019 health department report on HIV and other infectious diseases. Those percentages are encouraging. But they suggest that 1 in 5 HIV-positive residents in D.C. are not in treatment, and among those who are, 15 percent haven’t suppressed the virus, probably because they are not consistently taking their medications.
The last decade has seen a tremendous drop in new cases in D.C. The health department report, released in August, counted 360 new cases in 2018, a 74 percent decrease from the 1,374 new diagnoses in 2007. But it’s only 13 fewer than in 2017, a slowing in line with the country’s stalled progress: New diagnoses nationwide have stubbornly lingered at around 40,000 annually, with around half of those occurring in the South. Georgia, Florida and Louisiana are among the states with the highest rates of HIV diagnoses.
Education is key to bringing cases down further, says Mejia, who fits in as much information as he can during his encounters at the table and with test-takers. “When we forget to add education to prevention, to testing … we kind of, like, get stuck.”
A reason to come in the door
For many people, there’s a lot to learn about where things stand with HIV, such as U=U. The slogan was launched in 2016, but the science supporting the equation has grown out of studies from the last two decades or so.
Researchers have conducted large clinical trials of couples, heterosexual and gay, in which one member was HIV-positive and the other was negative. When HIV-positive partners consistently took ART, they brought their viral loads — the amount of virus present in the blood — down below what could be detected by laboratory tests. Positive partners with undetectable viral loads did not transmit the virus to negative partners. Treatment was also prevention.
The most recent evidence that undetectable equals untransmittable came in May 2019, when researchers reported in the Lancet results of a clinical trial of 782 gay couples. After more than 76,000 reported instances of anal sex without a condom, HIV had not spread from a positive to a negative partner in any couple. U=U holds true after a person has been undetectable for six months.
Clinical trials published in the last decade have also evaluated PrEP as a prevention option for HIV-negative people. PrEP is most effective when taken daily. If started the correct number of days before exposure and used consistently, PrEP can reduce the risk of HIV by as much as 90 percent for vaginal sex and up to 99 percent for anal sex. For preventing transmission among people who use injection drugs, another important risk factor, PrEP is up to 74 percent effective.
With ART and PrEP, health officials feel the time is right to tackle HIV anew. Early in 2019, the U.S. Department of Health and Human Services unveiled a plan to reduce new infections, now at roughly 40,000 annually, by 75 percent in the next five years and by 90 percent in 10 years.
Of the approximately 1.1 million people with HIV in the United States in 2016, about 160,000, or 1 in 7, were unaware they were infected. Mejia and his fellow health educators regularly visit various D.C. neighborhoods to reach people who are missing out on treatment.
The mobile clinic offers two HIV tests, one that swabs the gums and gives results in roughly 20 minutes and a 60-second test that uses blood from a finger stick. In the prelude to a test and while people await their results, Mejia gets to know the test-takers: whether they’ve been tested before, what they know about HIV, the last time they had unprotected sex. Making that first connection friendly and nonjudgmental is crucial to helping a person make and keep an appointment for treatment if the test comes back positive. “How you welcome your client at the time when you’re counseling is how the client is going to respond,” he says.
Once someone is in the door, Whitman-Walker staff accompany that person through each step of that first appointment, from learning about HIV and understanding the test results to prescribing medication and exploring insurance options, says Heather Alt, deputy director of nursing at Whitman-Walker. The patient-centered focus extends to figuring out a medication ritual, Alt says, whether it’s setting a cell phone alarm or filling a pillbox together. “If you’re more comfortable taking your meds in front of me, we can do it that way too,” she says.
Whitman-Walker, which in 2017 provided services to more than 20,000 people, about 3,600 of whom were living with HIV, has been a prominent part of Washington, D.C.’s efforts to temper its HIV epidemic. The same goes for the D.C. Health Department, which offers HIV testing and needle exchange, and runs public health campaigns. The city supports people living with HIV through the federally funded Ryan White HIV/AIDS Program, which provides services to more than half of HIV-positive people nationwide.
But even with D.C.’s many HIV services — as Mejia puts it, “our area is very blessed” — not everyone who needs help is getting it, the city’s annual reports reveal.
Castel, of George Washington University, and colleagues study a large group of HIV-positive patients called the D.C. Cohort. People traveling five miles or more to get care were 30 percent less likely, on average, to be keeping their virus levels in check, Castel and colleagues reported in 2018 in AIDS and Behavior. Most members of the cohort who had to bridge this distance lived in the southeast quadrant of D.C., where there are fewer HIV-care options, and where many residents contend with additional barriers, such as poverty and homelessness.
Martha Sichone-Cameron has worked with women and girls living with or at risk for HIV in the city, many from Southeast D.C., at The Women’s Collective, a community health organization. The stigma that prevails comes through in the stories of the clients she’s served. A lot of the women who were HIV-positive hadn’t told their families. Sometimes, the husband also was positive but wasn’t willing to go to the doctor. In one case, Sichone-Cameron says, “the guy used to take the medication away from the woman for himself.”
Sichone-Cameron grew up in Zambia, one of several sub-Saharan countries in Africa hit hard in the 1990s by the AIDS epidemic. She nearly died of AIDS in 2003, but through her work with a nonprofit organization caring for orphans, she was able to travel to the United States for medical advice. With a change in medication, she became undetectable within a year.
Through her advocacy, Sichone-Cameron has seen how the high prevalence of HIV in D.C., along with the poverty, violence and drug use that plagues some neighborhoods, puts women at high risk for infection. “Give them the power of education,” she says. “Give them the tools that are there, like PrEP.” PrEP is a discreet option for women seeking protection but facing resistance or violence from a partner, she says. “Put it in a vitamin bottle, you take one a day, nobody will know.”
PrEP’s power to stem HIV hasn’t fully been realized. Many people don’t know about PrEP, studies show, and its use is low. Around 1.1 million people in the United States were considered candidates for PrEP in 2015 due to their risk for acquiring HIV, according to the CDC. But only about 100,000 people used PrEP in 2017, based on a study of a national prescription database reported in 2018 in the Annals of Epidemiology.
The U.S. Public Health Service’s clinical guidance for PrEP recommends using PrEP for risky behaviors, such as condomless sex between men or heterosexuals, sex with an HIV-positive partner, sex with a high number of partners or injecting drugs. But to Sichone-Cameron, the women she’s worked with were vulnerable simply because of where they lived. “You don’t need to ask them about their behavior,” she says. “All you have to do is ask them their address and zip code, and that should make you prescribe PrEP.”
Discussing PrEP routinely with all patients could be a way to democratize its reach. “Risk prediction is an imperfect process,” says Sarah Calabrese, an HIV prevention researcher at George Washington University. “It’s the patient who knows the most about their sex life and their intentions.” And if health care providers prefaced that conversation by saying, “ ‘Listen, this is something we talk about with all of our patients,’ then that avoids patients feeling stigmatized,” she says.
Washington, D.C., has begun using a “status-neutral” approach to HIV care, to make PrEP a more likely part of the conversation. In the past, if a person tested negative, the response was often, “you’re HIV-negative, have a nice day,” says Michael Kharfen, senior deputy director of the HIV/AIDS, Hepatitis, STD and TB Administration in the D.C. Department of Health.
“That’s not sufficient any longer,” he says. A discussion of overall sexual health and wellness, including HIV prevention and an offer of PrEP, should follow a negative result.
Cox, who volunteers at Whitman-Walker, unintentionally learned he was positive in 2011 when he took his best friend to the doctor so the two could get tested together. “She thought she had something…. It just came back that she had a yeast infection,” he says. But the doctor nonchalantly informed Cox that he was HIV-positive. Cox was 21. The doctor “assumed that I already knew,” he says.
His trusted primary care provider confirmed the results and discussed next steps. “She made sure I was legitimately OK physically and mentally.” She has also worked with Cox to find one-pill formulations that work for him. He is leery of pills, having once choked on Skittles. But today the pill he takes is so small, “I just throw it to the back of my neck and just drink something real quick.”
He motivates himself to take his pill each night at 11 p.m. with a signature phone alarm: an ear-piercing scream, the kind uttered as an ax murderer approaches. Cox wanted something jarring to be “forceful with myself, like, take it now!” Today, eight years after his diagnosis, “I still remain undetectable.”
Cox mentors people newly diagnosed with HIV. His mentee Devonte Paulk learned he was HIV-positive in April 2018. Paulk was living in Atlanta at the time. “I instantly broke down, didn’t really tell anybody,” Paulk says. He didn’t feel like he had his family’s support.
“Because of their perception of gay people, period, you know, we’re just automatically going to have AIDS,” he says. “I was scared of the ‘I told you’s’ and ‘I tried to warn you.’ ” Paulk started treatment when he learned his status, but during the tumult of that time, he became depressed, used drugs to cope and fell off his meds. He moved to the Washington, D.C., area in November 2018, where he met Cox while hanging out with a high school friend.
“We just ended up talking that day,” says Cox, sitting with Paulk at Whitman-Walker Health, “and he just came out with a lot of things.” Cox told Paulk about the peer program, and that by joining, even if he wasn’t ready for the group sessions, it would mean Cox could help him as a mentor.
“My main thing was to get him on Medicaid and then get him back on his meds. His health came first,” Cox says. Paulk credits Cox for the fact that he’s back on his medication. “And I am currently undetectable,” Paulk says.
The first time Paulk came to the group, he was pretty quiet, Cox remembers. There are 20 to 30 people, young adults to octogenarians. The group includes gay, heterosexual and transgender people. Cox likes mixing the ages so that long-term survivors can share their stories with newly diagnosed members, “letting them know that it’s going to be OK.” The second time Paulk attended the group, “he opened up more,” Cox says.
“I realized I wasn’t alone,” Paulk says.
New members of the peer program often express shock and despondence over the diagnosis. Paulk described feeling dirty, a sentiment others have shared. Many say they feel unwanted, Cox says, “like they’re not going to be accepted at all, like ‘who will love me now that I have HIV?’ ”
Even in D.C., with comprehensive HIV services and a proud, active LGBTQ community, people can still feel shame. The stigma can stop some from going to Whitman-Walker, Cox says, since it has a reputation for treating HIV-positive people.
Cox talks to mentees about U=U to “let them know that it’s OK to be positive as long as you’re staying on top of your health.” The realization that they won’t spread the virus to a partner can “help people be back at peace.” By taking care of you, you’re taking care of partners too, he says.
Paulk says he’s breaking out of his shell more and more. “I called HIV a ‘situation’ for a long time,” he says. “I could not say HIV, it was always ‘my situation.’ ” Now he shares his status more freely. “I like to just go ahead and get it over with at the beginning,” he says. “It’s not everybody’s business, true, but it makes me more comfortable to be able to just come out like that without hesitating.
“Being here … it’s been an eye-opener, and for good reasons,” Paulk says. “I feel like a normal person.”