Kathie Hiers, the longtime head of AIDS Alabama, the umbrella agency for several HIV nonprofits in her state, tells a story about Centers for Disease Control and Prevention (CDC) director Robert Redfield, M.D.’s recent visit to Montgomery to talk about the $291 million that the Trump administration has begun disbursing to 57 counties, states, and cities in an effort toward Ending the HIV Epidemic (EtE) by the year 2030.
Top health officials, lawmakers, and nonprofit folks were assembled for the meeting, sitting around a large table. But according to Hiers, the state health department, to which the Trump funds will be disbursed, had only a few folks actually living with HIV at the meeting. “Mostly their employees,” she says, “and they were sitting in the back of the room like they were at the kids’ table.”
To Hiers, that reflects what she sees as the state’s insufficient efforts to truly engage the HIV community in what will be a long and complicated 2020 to 2021 process of first writing, then executing, a CDC-approved action plan for decreasing new HIV infections in the state—and increasing treatment, care, and viral suppression for those already positive—to levels effective enough to bring new diagnoses to a permanent halt, thus “ending” the epidemic.
In Hiers’ eyes, the state health department hasn’t done the work so far—and she worries that they won’t do it going forward.
“I don’t think they’ve prioritized people with lived experience,” says Hiers, herself HIV negative but an HIV nonprofit leader in the state since the 1980s. “AIDS Alabama is the state’s largest provider, and we don’t have a single person on staff who’s been represented in any of these state efforts. I’ve told them we want to be involved, and they assure me that this is just the beginning of the process, and that we will be included, but I don’t understand why we wouldn’t already be included in these early phases of the planning.”
Not surprisingly, state health department officials working on the EtE effort dispute her account. According to Sharon Jordan, M.P.H., the health department’s director of the office of HIV prevention and care, sitting at the table alongside Hiers was Hiers’ own director of prevention, Tony Christon-Walker, a gay Black man living openly with HIV.
But to Hiers’ larger claim that the HIV community is being overlooked, Jordan, who’s also been working on HIV in Alabama since the 1980s, says, “That depends on how you define ‘community.’ There will be room for nonprofit staffers living with HIV to be part of the formal planning process, but we’re also reaching out beyond HIV agency employees to people who are important in affected communities, such as gay Black men, transgender women, cisgender Black women, and Latinx folks—not just those living with HIV, but those at risk, faith leaders, businesspeople, college and university people.”
And she goes on: “AIDS Alabama is not the only HIV organization in the state. There are 14. So painting AIDS Alabama as the only one reflecting people living with HIV isn’t true.”
A Longstanding Tension
This tussle over how much say people living with HIV have over policies affecting their own lives isn’t new. From New York City to San Francisco to the Deep South to countries in Africa and Asia, it goes back at least as far as 1983, when a group of people living with AIDS came together to write the Denver Principles, which declared that people living with the virus should be central to HIV/AIDS-related decision-making at all levels.
And at this point, it is widely perceived that people living with (or communities at special risk for) HIV, even if they don’t have fancy degrees and professional backgrounds, have valuable real-life experience to share about how the disease should be handled and combated, especially in areas where professionals might have blind spots. For example, low-income people living with or at risk for HIV insisted for years that stable housing was key to their treatment adherence and overall health, before researchers started collecting data that echoed this, which in turn has led to more long-term housing assistance for people living with HIV in many places.
In New York City, for another example, it is widely perceived that record-low levels of new HIV infections in recent years are partly a result of new policies and messaging that health officials under current mayor Bill de Blasio created in close collaboration with community stakeholders—as opposed to prior to 2014, when health officials under then-mayor (and current presidential candidate) Mike Bloomberg largely shut out community input. New York City recently announced that it is the first place in the U.S. with data showing it’s on track to end its epidemic.
Now, as localities nationwide use the first round of the Trump EtE money to turn in their action plans to the feds, the issue is resurfacing nationwide, especially because the feds have issued a directive to localities to include community stakeholders in their plans. Somewhat confusingly, however, the directive appears not to have been issued until just before the plans were due.
Nonetheless, says Jeremiah Johnson, HIV project director at the research/advocacy nonprofit Treatment Action Group, “Localities working with community members is really vital, because where we’ve seen successful EtE initiatives, we tend to see high levels of cooperation between health departments and community-led organizations, where the former is using its strengths to provide the platform for the community to lead.”
Johnson, in fact, is part of ACT NOW: END AIDS, a nationwide activist coalition of nonprofits and health departments that is helping a handful of localities nationwide fund community leadership as part of their EtE process.
In addition to New York City, Johnson points to Houston as a place where community input seems to really be happening. According to Crystal Townsend, coordinator for the grassroots coalition End HIV Houston, that collective actually developed its EtE plan four years ago, using a social and racial justice framework, well before the Trump initiative was announced. (With a 2018 viral suppression rate of only 59% among Houstonians living with HIV, compared to the 90% experts say is needed to end an epidemic, Houston has its work cut out for itself.)
“We’re not under the health department, but they’ve actually been very open in agreeing that [going forward under the Trump-funded EtE plan] the community should be engaged even more broadly than our own reach has been,” Townsend says. “We’re connected to many traditional community groups outside the traditional planning bodies, but both we and the health department want to find ways to engage the general public, so we’re in the process of figuring out what that looks like. I’m really hopeful that with this new money, the health department will find ways to engage the community more broadly and meaningfully.”
Moreover, says Townsend, she would like to ask the health department, “How are you going to define community for this process? Is it just those 40 people sitting around your table? They have capacities that the community doesn’t have, so this is really the time for them to share their power—and to glean power from perspectives they don’t get being inside the health department walls.”
According to Beau Mitts, M.P.H., the Houston Health Department’s HIV czar, the city will define community broadly in the process. “We need to talk to people that we haven’t been talking to, to get out into the community,” he says. With the core planning group not yet put in place, Mitts says that efforts likely will include “listening sessions” across Houston, “taking our ears out into the community,” as well as a digital dashboard where the process can solicit feedback from people who can’t or won’t come to meetings.
Collaboration Is Possible
One jurisdiction where it seems as though the mayor and the health department are truly working with community stakeholders is Nashville, Tennessee, where community members met as far back as 2016 to start talking about an EtE blueprint. Currently, a fledgling mayor’s advisory council on EtE of about 11 people, formed late last year and made up mainly of health providers and HIV nonprofit leaders, is drafting a plan that’s already had the input of about 100 community stakeholders who break out into several subcommittees.
That’s according to Brady Dale Morris, one of the members of the mayor’s council. “I was very impressed at how much the community has been engaged and involved so far, even though we’re in our infancy,” he says. Many people living with HIV were among the 100 folks who have weighed in so far, he says.
He is, to his knowledge, the only person living with HIV on the mayor’s council. And although it includes African Americans, such as Amna Osman, the new executive director of Nashville CARES, it doesn’t include someone representing the group currently most affected by HIV—Black gay men. That, says Morris, could change.
Meanwhile, in Alabama, Kathie Hiers is still waiting to be engaged. “My staff is 80% Black and 5% Latinx, with a higher percentage of HIV-positive people than any other agency in the state,” she says.
To that, the city’s Sharon Jordan says that every nonprofit or agency in the state will be limited to two representatives in the EtE process—and beyond that, “we want them to connect us to names beyond their agencies. That’s where we’re running into a brick wall.” Finding people living with or at risk for HIV who have thoughts to share but are not already connected in some way to agencies “is not a fast process,” she says.
“We’re setting a timetable to engage reps from all the agencies starting in March,” she continues. “People may have different definitions of ‘community,’ but we all have the same end goal of developing a plan that’s representative of Alabama. Sometimes certain AIDS organizations feel like they have all the answers—but we have to meet in the middle.”