WASHINGTON, DC – To end the HIV epidemic in the United States, it is going to take more than the ear of the president, the science to back it up, or even the purse strings of the National Institutes of Health (NIH), said Anthony Fauci, MD, director of the National Institute of Allergy and Infectious Diseases.
“Community needs to be involved in almost anything that involves them; we learned that from the very early years of trying to do clinical trials,” Fauci told Medscape Medical News.
The pillars of the Ending the HIV Epidemic plan – designed to reduce new HIV infections in the United States by 90% by 2030 – are to test, treat, provide care, and “jump all over” HIV outbreaks, he explained.
But if there is an HIV outbreak, specialists can’t get into social networks fast enough to stop it if they haven’t laid the groundwork with the predominantly black, Latinx, queer, and transgender people who are now most vulnerable to HIV.
“You don’t want a white guy with a suit like me going into a community that is not my community,” Fauci laughed as he snapped his suit jacket. “You need faith-based organizations. You need community workers. You need people who can eliminate or at least obviate the stigma.”
The upcoming United States Conference on AIDS (USCA) 2019 – one of the nation’s largest gatherings of HIV community groups, faith-based organizations, and nonprofits – will be the first real test of whether the “white guys in suits” who developed the plan can sell it to the communities they will need for the plan to succeed.
Venita Ray was well into her term leading the strategic plan to end HIV in Houston – which had an HIV rate of one in 200 in 2016, according to the Texas Department of State Health Services – when she realized that just treatment and prevention access weren’t going to cut it.
What she learned in the process is that “you can’t look at this epidemic and really talk about a real solution without talking about racial and income inequity,” she explained.
You also cannot talk about ending HIV without talking about the fact that Texas did not expand Medicaid. And the fact that mass incarceration is factoring into the epidemic, she said.
“We didn’t really understand the implications of what we were trying to do,” said Ray, an attorney and former policy director at a Texas community health clinic. She is now deputy director of the Positive Women’s Network-USA, a group led by women living with HIV.
Focusing solely on HIV might make sense at the top, but to arrive at a solution, we have to consider the root causes of outbreaks, she told Medscape Medical News.
Bryan Jones, advocate, activist, and founder of HIV support groups for men, said that the organizing he does is not grassroots, “it’s DIRT-root advocacy: wonderful programs with no funding.”
The idea of DIRT – direct, inspiring, reachable, and teachable – is to create a movement to end HIV that “looks like, lives like, and talks like the people who are most affected by HIV,” he said.
That is as important as the new science of HIV, he suggested.
DIRT advocacy emerged from a 2013 Campaign to End AIDS summit that Jones organized in Cleveland.
During the summit, he insisted that attendees come with him to Garden Valley, a conglomeration of housing projects in the city with all the structural disparities that researchers say make people vulnerable to HIV: people doing sex work, people who inject drugs, and stable housing but unstable access to food.
It was important that the summit participants “got a glimpse into what a real neighborhood vulnerable to HIV looks like,” Jones said.
In this neighborhood, HIV isn’t a single issue because the people “don’t live single-issue lives,” he explained. It might not be a priority for residents to get tested for HIV or to take HIV medicine because they “have other life-threatening issues, like survival.”
Lives at Stake
Jones looks at the lack of investment in jobs, housing, and healthcare for Garden Valley residents, and then looks at the Ending the Epidemic plan, with its focus on HIV-prevention drugs, treatment, and molecular tracing. He has great respect for Fauci, he said, but he does not “think it will happen.”
“It’s hard to believe that we’re going to get access to these resources and that they want to help us when they’re not trying to help us in any other respect,” he said. “I’m not ready to jump headlong in until other people own up to the issues.”
To do so, Jones said people have to acknowledge that the current system contributes to high HIV rates in black and people-of-color communities ( Dev Psychol. 2018;54:2328-2340).
Development that comes into black neighborhoods often does not bring meaningful jobs for residents, it is still hard to get a mortgage in many black neighborhoods, and the lack of Medicare expansion disproportionately affects black and people-of-color communities, he explained.
When Jones attends the USCA plenary session on how to implement the Ending the Epidemic plan, he said he will be looking for a basic acknowledgement that “the system is fueling the epidemic, not stopping the epidemic.”
“We must be willing to have open and honest conversations about how white privilege fuels the epidemic, and how that white privilege must be leveraged for the greater good,” he said. “Until we do that, we’re just spinning our wheels.”
Ray said she agrees: “You can’t talk about ending HIV on the one hand and try to take healthcare away on the other.” You can’t create policies that criminalize people living with HIV and also try to treat people. You can’t separate children from their parents at the border on the basis of HIV status and deny people in immigrant detention life-saving medicine and say you want to end the HIV epidemic, she said.
Officials must involve communities in more powerful ways – not just in the implementation, but also in the design of the Ending the Epidemic plan, she added.
“It would mean slowing down a little and seeking to educate themselves on the root causes and the real solutions to have a deeper conversation,” said Ray, who is living with HIV. And specific structural barriers must be identified as part of the plan; for instance, Medicaid must be expanded in all states and syringe exchanges need to be supported.
“That’s what we did in Houston,” she explained. “We didn’t have all the answers, but we called out the types of actions needed, such as stopping the practice of criminalizing people with HIV, providing comprehensive sex education, and changing stigmatizing language around HIV.”
The Stigma of HIV
A decade ago, physicians in private practice in Memphis, Tennessee reported that they often avoided testing the teens and young adults in their care for HIV. This was despite the fact that Memphis has one of the highest rates of adolescents with HIV in the country.
Because the physicians didn’t know where to send young patients who tested positive to get care, they often did not test them, according to a 2016 report ( J HIV AIDS Soc Serv. 2016;15:158-179). And when they did test, they did not always report the results to the Shelby County Department of Health, which meant that the patients were not linked to resources.
The same was true for the local blood bank, which, it turned out, was not notifying people in a timely way that the blood they donated contained HIV. Many were lost to follow-up.
These were barriers that a coalition of community groups, schools, faith-based organizations, and healthcare organizations identified and resolved over the years using a community-involvement approach funded by the NIH, said Andrea Stubbs, MSW, LCSW.
Even though you’re in this situation, you’re still a person and you’re worth being cared for and cared about.
Connect to Protect, or C2P, was a 15-site intervention funded by the Adolescent Trials Network to see if building “AIDS-competent communities” could improve care, said Stubbs, who coordinated C2P in Memphis.
In C2P, researchers consider AIDS-competent communities to be “communities that can facilitate sexual behavior change, reduce HIV/AIDS-related stigma, support people living with HIV/AIDS, and cooperate in HIV-related prevention practices” ( AIDS Educ Prev. 2013;25:255-267) – many of the things that the Ending the Epidemic plan will need in local communities to be successful.
As the linkage-to-care coordinator for St. Jude Children’s Research Hospital in Memphis, Brooke Askew, MHSA, calls boys and young men diagnosed with HIV in the Memphis area 24 to 48 hours after a positive HIV test result.
She treats the diagnosis the way a parent would, with concern and urgency. She also calls just to check in.
“Sometimes I’ll call or text and just say, ‘Hey, what did you do this weekend?'” Askew told Medscape Medical News. “Or I’ll end the phone call with, ‘Go do something fun, and I’m going to ask you what you did next call.’ Those kinds of interactions are great at reminding them that, even though you’re in this situation, you’re still a person and you’re worth being cared for and cared about.”
The C2P sites did not just enter communities and expect to be welcomed. Instead, they followed a process of helping to address non-HIV-related community needs as they became part of the community.
From the start, the goal was to transform the structural barriers to well-being in people living with HIV, using the community as the guide.
It started with the researchers, well, researching. They compared where the virus was most prevalent with the location of available services. And then they shared their data with the coalition.
They were encouraged by the C2P protocol to provide assistance to local community organizations, such as health departments, nonprofits, and community-based organizations, “by learning the needs of the community and connecting them to resources,” which established them as “honest brokers” ( J Adolesc Health. 2007;40:489-498).
Staff attended community meetings and events to determine the strengths and needs of the community.
They “assisted agencies in applying for funding by collating and sharing grant and funding opportunities, generating data toolkits with compiled epidemiologic data and maps, and mapping additional agency data,” the researchers write.
They were even encouraged to review grant applications and data used by community groups to support their efforts.
“This established C2P as a committed and resourceful presence in the community,” the researchers point out.
When it came time for C2P researchers to start working on linkage to care for young people, they had earned the trust of communities.
“Sites cautioned against focusing too much on only HIV prevention providers during HIV prevention activities and partner formation,” the researchers report. Instead, they recommended developing an understanding of the interplay between HIV and other public health and community concerns.
“Public health problems do not occur in a vacuum,” they write, “but represent a complex interplay of multiple issues and socially driven factors; thus programmatic responses and policies should be addressed accordingly, with a multi-pronged and comprehensive approach.”
In Memphis, all that community building has paid off. The medical system began to require referring clinicians to share HIV results immediately with Askew, who then got to work reaching out.
The same partnership led the blood bank to begin referring donors living with HIV to the Shelby County Health Department. It also added, to the letter notifying donors of their status, detailed instructions on how to get care.
Referral time from the blood bank to the county health department dropped from 6 months to 1 week. By 2016, eight additional young people had been referred from the local health system to Askew and the clinic at St. Jude, and 17 more reported to the county health department for care after receiving letters from the blood bank.
Since the program launched in 2010, Askew has received close to 800 referrals for linkage to care. She expects to receive 100 more referrals this year.
The C2P study is over, but Askew and the team at St. Jude continue to do their work. They have been able to link 78% of those referrals to care at their clinic. At St. Jude, 96% of their young clients begin treatment, and 90% of those are still in care a year later. The clinic has started to provide medication at a patient’s first visit, said Aditya Gaur, MD, from St. Jude, who was principle investigator for C2P Memphis.
But it’s not easy.
A study of all 15 C2P sites showed that some coalitions never developed the trust they needed to make changes because one organization dominated the collaborative effort ( Am J Community Psychol. 2017;60:199-214).
At other sites, the inability to speak about sex openly or to have conversations about reproductive healthcare hindered the ability to address structural barriers. And the political and social unwillingness to address the structural determinants, especially in the South, left some coalitions feeling overwhelmed.
In Memphis, one structural barrier that the team is still working on is the lack of transitional housing that feels safe for St. Jude’s primarily black, young men and teens in same-gender relationships. Meanwhile, Askew continues to bring the personal rapport she has with her patients to bear on their clinical outcomes.
Although St. Jude only enrolls people 21 years and younger, the clinic and Askew have a contract to help the 22% of people they could not help in their own clinic. And she provides them with the same linkage to care that she provides her St. Jude clients. With intensive casework and rapport-building, patients contact her when big life issues start to get in the way of care.
“I had a client who, because of the way he was treated at home, left home,” she said. “But he had the mindfulness to text me where he would be staying. Sometimes this was in a vacant house. So we made an arrangement: Every 2 days, you’re going to text me and let me know you’re okay. If I didn’t hear from him, I knew exactly where to go.”
Connect to Protect is funded by the National Institutes of Health and the National Institute of Child Health and Human Development, among others. Fauci, Jones, Stubbs, Askew, and Gaur have disclosed no relevant financial relationships. Ray reports no personal financial relationships, but said that Positive Women’s Network-USA receives some funding from Gilead Sciences.
United States Conference on AIDS (USCA) 2019.
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