To End the HIV Epidemic, Clinicians Must Mirror Community

Heather Boerner

November 04, 2019

PORTLAND, Oregon — If you're going to end the HIV epidemic in the United States by 2030 — as the current administration has vowed to do — the systems, the providers, and the care approaches have to be set up for the people most affected by HIV; that is, people like Daniel Driffin, MPH.

Driffin, who is black, same-gender loving, and living in the South, is the cofounder of THRIVE SS, a nonprofit created to address the challenges faced by black Americans living with HIV. He believes that the community has to be involved everywhere people are working to end HIV: in the clinic, in nursing and medical schools, in research labs, and in policy rooms.

Meaningful "involvement is the action that leads to meaningfully serving people," he explained. And this moves the field "toward measurable successes."

But right now, the demographics of the HIV-provider workforce are a far cry from what he sees in the mirror.

By 2030, government officials expect that 71% of RNs in the United States will be white and 11% will be black, according to data from the Health Resources & Services Administration at the US Department of Health and Human Services. This is essentially the same demographic makeup as today's workforce.

And data on how many RNs and other allied professionals are gay, lesbian, bisexual, transgender, or otherwise queer (LGBTQ+) are scarce, as are data on how many healthcare providers are themselves living with HIV.

This is one of the challenges on the minds of nursing leaders as they head to the Association of Nurses in AIDS Care (ANAC) 2019 this week.

"It's something I'm passionate about," said Carol Dawson-Rose, RN, PhD, who is national chair of the meeting. "I do think this really will change the way care is delivered."

Table. Total, Nursing, and Newly Diagnosed HIV Populations in the United States by Demographic Characteristic
Characteristic Total Population, % RN Population, % Newly Diagnosed Population, %
Black 12.0 10.8 43.1
White 61.0 75.6 26.0
Latinx 18.1 Unknown 25.6
Men 49.2 10.7 81.0
Women 50.8 89.3 19.0
Transgender 0.6 Unknown 0.2–2.0*
LGBT 4.5 Unknown 66.5
Living with HIV 0.065 Unknown 100.0
*Could be an underestimate (AIDS Behav. 2017; 21:2774-2783); HIV diagnoses at CDC-funded HIV testing sites is three times that of the nontransgender population

Sources: CDC, US Census, Gallup Polls, The Williams Institute of UCLA School of Law, Kaiser Family Foundation

From Hard to Reach to Meaningfully Served

In Arizona, when the state offered HIV testing by mail-order kit instead of at a clinic or through traditional AIDS service organization, the hard to reach were suddenly reachable.

"For many, many years, we funded the same AIDS service organizations that are all along the exact same street or within a 4-mile radius," John Sapero, office chief of the Arizona Department of Health HIV Prevention Program, said at a recent conference, as reported by Medscape Medical News. HIV testing reached the same pool of primarily white gay men already engaged with those agencies.

The approach wasn't stagnant, but HIV testers "weren't going out the door to try to reach new people, and new people weren't coming in the door."

In Arizona, 29.9% of the people living with HIV are Latino and 14.6% are female.

When the health department started offering home testing kits and providing support for people during and after testing, hard-to-reach populations — young women, Latinos, gay men 25 to 34 years of age — were not only accessible but eager for testing. In fact, 53% of those who asked for a home kit were Latino or Hispanic.

Some providers have pushed back, expressing concern that without an in-person meeting, patients might not get their needs met. But what the results say, said Sapero, is that many people are "resistant to that initial appointment with the provider."

"The biggest difference here is that the client is in control. That's hard for folks," he explained at the United States Conference on AIDS. "The question becomes how much power are you willing to let go of. If you lean more toward the power portion, this approach may not be right for you. But if you can balance these things out, if it's mixed together right, you can do great things and get the community involved."

Disservice Providers

For Driffin, that's the easy explanation for why so many hardly reached people responded to the home testing kids. The harder one for providers to confront is that people who don't engage with the system as currently designed have good reasons not to.

"If community does not have to interface with a homophobic provider, a transphobic provider, or a racist provider, and can go to a website and get exactly what they need without any middle man, they are going to do that every time," Driffin said. "Someone won't be calling me by the wrong name, someone won't be looking at me funny. It's just safer all around. It's less traumatic."

That's the conversation that providers should be having, he said. To meaningfully serve people living with HIV today, systems need to address the structural barriers that discourage people from staying in care, including the ways in which structures have been set up to dissuade people most affected from engaging in care.

Driffin has taken to social media to highlight the ways in which the system is failing people with HIV, particularly black same gender loving men, using the #disserviceproviders hashtag. He quoted one man who said: "I've been out of care and my case manager hasn't called me…this year." That was in December 2018. (Driffin's comment: "I am now convinced #agencies receiving millions of dollars don't even know all the men who are out of care. #disserviceproviders").

Or, he posts, "I cannot make up the horrors that I hear from black same-gender loving men accessing HIV care in Atlanta. It makes no sense. I have to write the CEO of organizations monthly to see changes. #disserviceproviders"

Or, "So to add insult to injury, the #hotline to help people living with HIV impacted by #HOPWA isn't set up for #voicemail. How is payroll justified at #CityofAtlanta #disserviceproviders."

Or, "You have to be a genius as a person living with HIV in the South to remember everything you are required to remember to receive services and providers to do their JOB. #disserviceprovider."

In Atlanta, where Driffin has served on the Fulton County Task Force on HIV/AIDS, officials are just beginning the first needs assessment in the area since about 2010. This year, it will include a survey of client satisfaction, not just with their organizations but with their providers. This is to see where structural changes and implicit bias training could be implemented so patients will want to stay in care.

"This is about truly reimagining what it means to be connected to your patient in providing the best health for individuals," he said. "The next step is the meaningful piece. That's where the true hope is found."

Bring Community Into the Workforce

Dawson-Rose said she was talking to a colleague about the ongoing disparity just the other day. "We're doing really well except with black people, even in a place like San Francisco that has had really good success," she explained. "What are we going to do?"

One answer is to reduce stigma and increase culturally competent care for providers already in practice. At ANAC, there will be a plenary featuring research from women-of-color scholars on the HIV epidemic in black women, sessions on providing safe care for transgender populations and changing language to reduce stigma and discrimination in clinical settings, and posters on trauma-informed and culturally competent care for people living with HIV.

The other, longer-term answer, she said, is to bring "people living with HIV and people of color into the nursing workforce."

It is not clear how many ANAC members come from communities most affected by HIV, but there are efforts underway to expand the pool of providers to include people who look like and have experiences similar to those most affected. Driffin is cofounder of the Young Black Men's Leadership Initiative, which is trying to increase the ranks of young, black men in public health, research, community mobilization, and housing.

The Clinical Nurse Leader Scholars Program, designed to encourage the leadership aims of nursing students who are members of the patient population at large, is an initiative of ANAC and the University of Maryland School of Nursing.

ANAC members mentor the scholars and help them prepare to present their findings at conferences, and the scholars serve on the ANAC national committee. The seven scholars who will attend the ANAC conference this year are involved in programs that aim to make the HIV-care workforce reflective of the people most affected by the virus, reported Carole Treston, RN, executive director of ANAC.

In addition, Dawson-Rose works with students pursuing nursing as a second career, which is one way to bring in more people affected by HIV. A few will attend the conference, including a man with transgender experience and a person living with HIV.

More Than Your Story

When Mariah Wilberg started working in HIV, her story was proof that people with HIV are healthy and happy, and it was a powerful way to connect with her clients.

But then "I was told during a job interview for which I was abundantly qualified that I needed to move past just my story," she said. "It's something I've learned to navigate. I'm someone openly living with HIV and wanting, and feeling called, to share my story and break down stigma, and to also be recognized as a young professional with a lot of skills."

Sometimes, in her current role as coordinator of the Statewide HIV Strategy and Services in Minnesota, she said she waits to share that she's living with HIV out of fear that people will think she's in her role "just because of my status."

She understands that as someone affected by HIV, there's a real chance she could be tokenized by organizations serving people with HIV. That is the challenge of meaningfully involving people from communities affected by HIV in their own care, she said.

Often, perhaps without meaning to, organizations keep those most affected in roles with little decision-making or care-delivery power, Wilberg added. Patients take notice when all your transgender staffers are volunteer health educators, but none are nurses, and when all your black employees work at the front desk, not in the C-suite.

If you are always asking the same people to be speakers or share their stories when it benefits you, the next step is to invest in those people's professional development, either through continuing education or tuition reimbursement, she said.

"It's a bummer to be approached only in the context of your story," said Wilberg, who will graduate with her master's in public administration next month, thanks to hard work, understanding bosses, and tuition reimbursement from her job. "Recognize that they have other offerings, skills, and strengths that come from their lived experiences. Maybe they are awesome presenters or Excel wizards. Seeing people as a whole person is important to bring everyone to the table."

Editors note: In the table, the percent of the newly diagnosed population who are men has been corrected.

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