Kick HIV Care Out of the Clinic

Heather Boerner

September 06, 2019

WASHINGTON, DC — More than 50 protesters chanting "You can't end this without us" stormed the stage here at the United States Conference on AIDS 2019 after a presentation on the Ending the HIV Epidemic plan by Robert Redfield, MD, director of the Centers for Disease Control and Prevention (CDC).

Hoisting signs saying "Trans People Must Lead," "Clusters Are People," and "Eyes Off My Virus," the protesters took the stage to demand an immediate moratorium on the molecular tracing of HIV until laws that criminalize HIV are removed and patient privacy can be secured.

They also demanded the formation of an independent review board with oversight and partnership rights to the design and implementation of the plan, meaningful community involvement in CDC negotiations with Gilead Sciences to guarantee lower costs for the HIV prevention pill Truvada, and the implementation of a two-step gender question in CDC surveillance systems so that transgender people are accurately counted.

"We are here to demand assurances that community will be given actual decision-making power and oversight of the national, state, and local implementation of the new Ending the HIV Epidemic plan," said Ronald Johnson, chair of the US People Living with HIV Caucus. "At a time when this administration is attacking the communities most affected by the epidemic, it is impossible to end the epidemic with biomedical interventions alone."

"All progress in the fight against HIV has been made with community and when community has forced it," added Malcolm Reid, program manager of Thrive SS in Atlanta. "No more closed-door meetings, no more listening sessions without feedback. We must be heard."

"Disruptively Innovative"

During his presentation, Redfield shared his vision of how the plan should work.

Imagine a healthcare system that reaches everyone, where HIV testing, prevention, and care come to people most vulnerable to HIV, instead of trying to find new ways to get people into the clinic, he said. Imagine a world in which housing is part of comprehensive medical care.

Each of the 47 counties, seven rural states, and two cities that make up the Ending the HIV Epidemic target areas need to "think different" to make sure that the people who are most affected by HIV receive priority care, Redfield told the audience.

For both diagnosis and treatment, "the way we do that is not to maintain the clinical approach we've had," he explained. He pointed to the need to develop a community workforce and "get new voices at the table who can bring people to diagnosis, treatment, and prevention in a manner in which the medical community to date hasn't been able to do."

"We need alternative, nonclinical settings that allow people to get diagnosed," he said to boisterous applause.

"It's the same for people who have not effectively stayed in care. We need to be disruptively innovative, and not necessarily fit them into a disease system we've spent decades building, but try to figure out how to meet people where they are."

Redfield struck a low-key but passionate posture as he presented the plan to the standing-room-only audience of HIV community-based organizations, providers, and front-line service staff. The plan aims to reduce new HIV diagnoses — by 75% by 2025 and by 90% by 2030 — by targeting more funding, support, and molecular surveillance to the 47 counties in the United States that accounted for more than half the HIV diagnoses in 2017.

"Stigma has no role in public health," he said as he affirmed his commitment to support access to treatment and prevention for everyone who could benefit from them. Evidence-based solutions, such as safe syringe programs for people who inject drugs, ought to be part of this plan, he asserted.

"I believe with every bone in my body that housing is a medical issue," he added to raucous applause.

Vision Not Enough

Redfield's presentation was met by nonprotesting members of the audience with both optimism and skepticism.

For Ace Robinson, director of strategic partnerships at NMAC, which organized the conference, it was both surprising and positive to hear the director of the CDC talk about how housing and employment are key to helping people achieve viral suppression and answer questions candidly about healthcare for all, including immigrants and transgender and queer people of color.

"I think we're going in the right direction," said Robinson. "It was great to hear the CDC director focus directly on the community needs and really come around to saying what disruptive innovation really looks like."

For Raniyah Copeland, MPH, president and chief executive officer of the Black AIDS Institute, which has issued its own plan to end HIV, it was clear that Redfield had heard what the community said. But, "I don't see how the plan is changing because of it," she said.

For instance, there is no money in the plan for the community-based organizations that are already trusted and connected to the most vulnerable communities. And the fact that all the money from the CDC will be flowing through county health departments into federally qualified health centers — which may not have a track record of good HIV outcomes and which will require extensive capacity building before they have a basic understanding of HIV science and stigma-free care — makes Copeland question how innovative the plan really is.

"They are talking about radical innovation, but the strategy is not radically innovative," she told Medscape Medical News. "A radical innovation at the federal level would be demanding community engagement in some meaningful way, with percentages — say, 20% specifically going directly to community engagement and mobilization and response to social determinants of health. That would be radical. That would be innovative."

"What would be innovative would be to say, 'these community-based organizations have huge pull in the communities we need to engage; we're going to put money into making them federally qualified health centers'."

Whether the plan will be influenced by the critiques of the community has yet to be seen. Immediately after the plenary, Redfield met with the key organizers of the protest. By press time there was no word on whether the demands would be incorporated into the plan, and Redfield was unavailable for comment. But he did tweet:

For Copeland, just as the plan is an ongoing effort, so will be the push to include community in meaningful ways.

"We're shouting it out," she said. "We're going to say, 'We were here last week. We're here again this week. We will be here next week'."

NMAC and the Black AIDS Institute each receive funding from Gilead Sciences, Merck, Janssen Pharmaceuticals, and ViiV Healthcare. Redfield and Robinson have disclosed no relevant financial relationships.

United States Conference on AIDS (USCA) 2019. Presented September 5, 2019.

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