Updated Sept. 10
September 8, United States Conference on AIDS, 2017. Washington, D.C.: Black men wait 32% longer to cross the street than white men, according to a study from Portland, Oregon. Males in their 20s, identically dressed, had very distinct experiences: While the white men waited only 7.4 seconds to cross, Black men waited an average of 9.79 seconds for a driver to yield after signaling their intention to cross.
Such an anecdote, at first glance, seems to have little to do with health care. Yet—as Dr. David Williams of Harvard University, the keynote speaker at the opening plenary of the 2017 U.S. Conference on AIDS (USCA), illustrated with diverse statistics—the overlap between structural racism that people of color, particularly Black people, face every day and significantly lower health outcomes is impossible to ignore. Even Black people with a college degree have a shorter life expectancy than white people without a high school diploma. When it comes to health disparities, there are systemic problems that run even deeper than the already very real and widely acknowledged problem of lack of access to poor and working class people.
Despite addressing different topics, the first two plenaries of the conference, as well as a number of panels and workshops, have been underpinned by a recurring theme: Access to health care alone is not the only cause of disparities in health outcomes, and increasing access will not eliminate the disparities in the absence of other interventions. If we truly hope to end the HIV epidemic in the U.S., we must address all the barriers to care—we must indeed make access to affordable, comprehensive health care available to all people, but we also must ensure that providers treat and support their patients in an affirming manner and spirit of cultural humility, that people living with and vulnerable to HIV see people who look like and can relate to them when they seek or are offered services, and we must make sure that interventions are appropriate to the populations they are hoping to reach.
As Charles King of Housing Works affirmed in the opening of Thursday’s lunch plenary, Act Now: End AIDS, undetectable=untransmittable (U=U). We know now, as researchers have for years, that a person living with HIV who has a sustained suppressed viral load cannot sexually transmit HIV to their partner. It is clear that engaging and retaining people living with HIV in care is our greatest—and only–hope of eliminating new transmissions, as well as in preventing AIDS-related deaths. Yet far too many health care providers still fail to inform their patients living with HIV that adherence to treatment and maintenance of an undetectable viral load will prevent HIV transmission to their loved ones.
“No provider since I was diagnosed in 2001 has ever told me that being undetectable prevented transmission,” said Shyronn Jones of Atlanta. “I learned about it last year, from Bruce Richman [founder of the Prevention Access Campaign]. I feel betrayed by my doctors, that they withheld this information from me.”
Jones’s example is echoed by numerous people living with HIV, especially women of color. Asked why they do not convey this critically important information to their patients, medical providers sometimes say that they don’t think their patients can “handle the information;” they worry patients won’t understand that continued viral suppression requires adherence to treatment; they worry that knowing will discourage condom use. Such excuses come off as patronizing, disrespectful of their patients’ intelligence. This is just one example of how providers undermine their patients’ trust in them—a powerful barrier to engagement and retention in care.
Journalist and activist George M. Johnson, a panelist in Wednesday’s session hosted by the Black AIDS Institute highlighting their new report, the State of Healthcare Access in Black America, reminded us that the history of being left out of the health care system entirely or used as lab rats by the health care system has created an intergenerational mistrust in the Black community that is hard to break. Even when there is access, people may be reluctant to take advantage of that access.
Tiommi Luckett, a Black woman of trans experience from Helena, Arkansas, said of her diagnosis, “The medical provider simply told me that I had tested positive. That’s it. Nothing more.” She was not given information or resources; she was not linked to care. She finally found an AIDS service organization by using Google, and was in care within a couple of months of her diagnosis. How many people fall through the cracks that way, never get engaged in care, and suffer terribly as a result?
Indeed, women of trans experience, particularly trans women of color, report facing discrimination at every level, from medical providers to AIDS service organizations to law enforcement, leaving many reluctant to get tested or seek care. Employment discrimination can be an indirect barrier to care, even when access is there: As Kiara St. James, executive director of New York Transgender Advocacy Group (NYTAG) pointed out in Thursday’s lunch plenary, “If trans women are engaged in survival sex work because they can’t get a job, and you tell them they can get tested and get the results back in a couple of days, they don’t want that. It’s not helping them. You have to find a different way to reach them.”
In a Saturday afternoon session, Access to Care and Communities of Color, the panel of presenters explored with attendees some of the common barriers to care they hear about in their work within communities of color. Transportation–especially for people living with HIV in more rural areas–and childcare–especially for women–were reported as being roadblocks to engagement in care. But so was stigma: Some people did not want to be seen, or did not want their partners to be seen, anywhere in the vicinity of an HIV clinic. Some worried the providers who were members of their communities might disclose their status to others. Others, especially in the trans community, had felt so demeaned by providers they simply did not want to go back to the doctor. Many of these barriers were identified in PWN-USA’s participatory research report, Securing the Future of Women-Centered Care, released last year.
The panel also discussed ways to start breaking down those barriers on organizational, individual and systemic levels. Venita Ray, public affairs specialist at Legacy Community Health in Houston, convened advisory boards of most impacted and marginalized community members, such as Latinx women of trans experience, to come up with recommendations on how to improve the experiences of people living with HIV seeking care. She then brought that guidance back to the clinic’s administrators and ushered through processes to ensure everyone was being treated in an affirming way.
By dismantling systems that perpetuate racism and oppression; by ensuring the voices of the most impacted communities are heard, given a platform to express what they need, and that those recommendations are then implemented; by ensuring that providers working with these vulnerable communities are representative of those communities or have the cultural humility to respect them and work with them as partners in health care; and by treating health care as a human right, we could stop the AIDS epidemic within our lifetime.
In the Trump era, advocates will have to fight harder than ever to force the changes needed where little political will currently exists. But the scale of the injustice dictates the scale of the response; now more than ever, we cannot afford to wait or ask politely.