'We Have Work Before Us, People': HIV Nurses Meet, Mourn and Prepare to Fight in Wake of U.S. Election
Dana Hines, Ph.D. M.S.N., didn't want to come to Atlanta on Wednesday, Nov. 9, despite the importance of the annual conference of the Association of Nurses in AIDS Care (ANAC).
"The day after the election, I felt paralyzed," said Hines, an assistant professor at George Washington University in Washington, DC. "I felt depressed -- like I was grieving, like someone had died -- because as a nurse and an HIV researcher who's working on issues that impact trans populations, I am deeply troubled and bothered and scared by what's going to happen with funding to support HIV research with the current administration."
With all of those emotions soaking her system, she wasn't sure she wanted to deal with what often happens at airport security: the "random selection" to the 3D scanner, and the pat downs of even her spiraling, natural hair.
She wasn't sure she wanted to fly into Georgia -- even the blue dot of Atlanta -- because Georgia "had voted for this," this change in administration, this Republican-led House and Senate that has made its distain for health access, LGBT rights and black lives evident. As an Indiana native, she knows what Mike Pence, the vice president-elect, has wrought in that state.
Yet, somehow, she did walk through the security gates in D.C. And she did land in Atlanta. And what she found on the other side, at the annual ANAC event, was an oasis. It wasn't an alternate reality in which the Electoral College matched up with the popular vote, ushering in a president with a plan for HIV care and prevention. But it was a safe space, she said, to talk and mourn and prepare to fight -- all with people who are also dedicated to the care of those affected by HIV.
"It feels good to know that there are other people who don't look necessarily like me, a black woman, who can empathize and understand what we are feeling in this moment," she said. "There's been this common theme throughout people's keynotes and the plenary sessions acknowledging that we are all here and that many of us came here in a place of feeling hopeless and wounded, but that we can't give up that fight. We have to continue to use this energy and transform it into something that is more constructive."
Registered nurses, nurse practitioners, allied health professionals and researchers who attended the conference discussed ways to get people enrolled in care and tackled the conference's theme of "no one left behind" in care or cure. But the specter of funding cuts and worsened stigma hung over everything, interspersed with points of light and connection.
The People I Advocate For Can't Just Take Off Their Identities
Before the opening plenary, Jonah Pierce, an HIV/AIDS certified registered nurse at a Ryan White clinic in North Carolina, was putting his phone away and looking a little stunned. Among other things, he'd gotten a call from his sister. She told him that she'd been run off the road by a white guy who screamed, as he went, past that Hillary Clinton was a traitor and should be arrested. It made him think, he said, of her safety and of his own.
"Should I take the stickers off my car?" he said, his voice tight. Then he straightened and said, "No, I won't hide."
There were other stories, like Hines' friend in Indiana, who posted on Facebook that she'd been followed for several blocks because she had a license plate emblazoned with a rainbow and the name of a local LGBT youth group.
"Here's this cisgender woman who is in a heterosexual relationship," Hines said. "She thought, 'Should I take this license plate off? Should I change it?' And she was like, 'No -- because the people I advocate for, they can't just take off their identities.'"
Then the opening plenary started. Jason Farley, Ph.D., M.P.H., ANP-BC, co-director of clinical core for the John Hopkins Center for AIDS Research and current ANAC president, took the stage only to inform the group that a member had just received a call. Someone had walked out of his house that morning to a sign on his car saying, "Your gay marriage doesn't matter and neither do your votes."
"I haven't stopped shaking since he told me that," Farley told the crowd. "I'm not telling you this to open this conference on a downer. I'm sharing that with you because we have work before us, people."
Rewriting the Letter to the New Adminstration
On Tuesday, Election Day, plans for the transition to a Clinton Administration had just about been completed. Carlos del Rio, M.D., a professor of medicine at Emory University and a physician at the Ponce De Leon HIV clinic at Grady Medical Center in Atlanta, had worked with a team at the HIV Medical Association to put the finishing touches on a letter to the incoming administration.
At the time, he told the plenary audience, "We were thinking about a Plan B" -- that is, a Trump Administration -- "but we said, you know, let's not even think about a Plan B."
Likewise, Dazon Dixon Diallo, founder and president of the sexual and reproductive justice group SisterLove, had been working with the people who'd be involved in a potential Clinton Administration to complete transition documents around HIV.
Then she added, "Everything was falling in line with what everyone was telling us, and then at 9 o'clock, shit changed. And now we're in a whole new, different spin."
Indeed, the election results had the policy people at the conference sharing how they are adapting to the new reality. Diallo said the organizations she's involved with aren't going back to the drawing board, but they will be going "way back and we have to come at it very differently."
Del Rio told the audience that, once the election results were clear on Wednesday, he did have to go back, and they did have to attempt a Plan B letter to the new administration on the importance of HIV funding and support.
This was the message he had for the nurses in the audience: We're going to have to work with the new administration. And we're going to have to speak to them in a language they might hear. So, del Rio rewrote the letter, highlighting that Ronald Reagan signed the Ryan White Care Act into law, and George W. Bush started PEPFAR.
"For our patients, for our country, we cannot just say everything's going to go to hell," he said. "This is not a matter of putting our heads down and saying, OK, let's do something in four years. Half of the country voted for something different, and I think we need to push for those things."
Indeed, Carl Dieffenbach, Ph.D., director of the Division of AIDS at the National Institutes of Health (NIH), who addressed the opening plenary on cure research, said he's been at the NIH through several administrations. The next few years, he said, are going to require an organized, concerted effort. The U.S. is the primary funder of HIV research around the world.
"We have to take the big-picture view of research as part of a continuum of what we do in terms of the basic epidemiology that the [Centers for Disease Control and Prevention] does," he said. "At NIH, you have HRSA [the Health Resources and Services Administration], and you have SAMHSA [the Substance Abuse and Mental Health Services Administration], and you have CMS [the Centers for Medicare & Medicaid Services] and everybody. We have to look at this as a continuum. And all the agencies need to come up, not just the NIH."
But this still left some, such as Christopher Roberson, a nurse practitioner in Baltimore, concerned. His job doing outreach to people most affected by HIV is funded by an HRSA grant. He doesn't know, he said, what will happen to his position or to the people he serves. Any cuts, he said, "will certainly affect the care continuum."
That foggy future was on many people's minds at the conference, including Dieffenbach's.
"I was telling Carole [Treston, ANAC's chief nursing officer] beforehand, I have a crystal ball," Dieffenbach said to laughter from the room. "It is so cloudy right now. It's like the smoke over Atlanta. Actually, it's not as clear as that."
We Still Alive
ANAC held the conference in Georgia, the location of the second-largest HIV epidemic in the country (behind Florida) precisely because the epidemic has changed. It's largely rural, African American and, often, poor -- impacting people who don't have a lot of access to care and places where public health programs are operated without much state or federal funding.
In a weird way, it was the perfect setting in light of potential cuts to HIV and public health funding. After Diallo's session on HIV in African-American women, she ran into an ANAC member. Between fielding congratulations for her session and greetings from nurses, she chatted with a white woman and non-Southerner, who told Diallo she'd been in a dark hole since the election but also buoyed by moments of light provided by Dieffenbach and others during the conference.
"It was like, OK, we have some work to do," the woman said. "And I'm glad that some people are looking forward because I'm not there."
"I ain't got a choice," Diallo responded. "Because, I keep reminding people, I live in Georgia. This has been our existence with these kinds of people."
Then Diallo paused and smiled and said, "Don't be scurred. We still alive. We ain't dead."
The other woman agreed and started speaking faster, saying, "I realize how incredibly privileged I am because I've never had this feeling before. And that's what I thought about: If I lived in Georgia ..."
"... Georgia, Alabama, Mississippi," Diallo provided.
"And if I had a different skin color and different life ..."
Diallo nodded. "Pick one."
"I would be. ... This wouldn't be as. ... This wouldn't have been the first time in my life that I've felt this," the woman said to Diallo.
Someone else piped up, saying that it was a welcome-to-the-world moment.
"Yep," Diallo said, "welcome to the world. But hey -- now we're in the same boat."
Still, even with all her experience, Diallo said she's worn out. She'd just returned from South Africa and was still jet lagged. Then the election results came in. The day after the election would have been her late husband's 50th birthday.
"I'm tired," she said. "I'm tired."
But she doesn't stay down long.
"I ain't gonna front," Diallo told me. "Every time I see them put up a new face of who might be in the cabinet, I get this grip, like, 'Oh, we're fucked.' And then I go, 'Oh, but I got all these people in my state right now.' Oh, OK. We know how to fight this."
We also know, del Rio reminded the audience during his plenary, how to provide prevention services and care for people living with HIV in climates of criminalization and stigma and with little funding. Just look, he said, to Africa.
Global health doesn't exclude the U.S., he said. We're part of it.
"We need to bring [those lessons] home," he said. "And we need to implement it here. Because increasingly we are becoming a developing country in many areas."
Quiet Words Between Sessions, Plus Fairy Dust
The conference was subdued. Had this been a conference with a lot more activists or advocates present, it would have had a different cadence, Diallo said -- moments of deep despair, followed by moments when rage swept the room. As it was, the so-called bubble manifested as quiet words between sessions, a hand on a shoulder and a shared moment where the common words were, "I'm so glad I'm here."
For Erik Mortensen, a nurse practitioner in private practice in New York City, the conference was a respite and a relief. On the morning of the election, he was telling patients, "I'll see you when we have our female president!" The election results, he said, have been like one gut punch after another.
Still, Mortensen showed up and showed out -- in this case, in a delicate tutu, tights and sneakers. For the 12th year in a row, he did a little ballet to the Tinkerbell song during the conference's opening-night gala. He was hesitant -- he was a professional dancer 25 years ago, but he's rusty now. And, he gets tired more easily. But, he pushed through.
"I just said, 'There's no room not to connect,'" he said. "These people need love. I need love. It just kind of washed over me, and it was profound."
All the more so for him, he said, because almost everyone in his family voted for Trump.
"I needed this so bad," he said of the conference. "The rest of the conference has been so important to open me up. It always does; I always get re-inspired. But this week, with my whole family voting for Trump -- almost my whole family -- you know, me feeling like I'm from another planet from my relatives, being here in the army of amazing people who build mountains all over the world here ... I just wish other people had a network like I do."
"It Fills You Inside for Pressing Forward"
Treston made a point even before the conference started -- even before the election -- that ANAC has a long history of activism on behalf of patients.
"Back in the ACT UP days, ANAC nurses were on the front lines of protests," she said.
Now, she said after the conference's closing plenary, they may be again.
In a video displayed during the last plenary, photos of ANAC members scrolled across the screen: nurses at ACT UP protests; nurses hugging their patients who were dying from AIDS-defining illnesses in the 1980s; current-day photos of nurses grouped in threes or fours, wearing name badges, rosy-cheeked nurses who are themselves living with HIV. The video's theme song was Sara Bareilles's "Brave."
On the closing afternoon of the conference, four days had passed since the election, and there was still no certainty about funding or direction. The horror stories of abuses and discrimination kept pouring it. But Mortensen said he was leaving prepared to fight. So was Roberson.
"It fills you inside for pressing forward," he said.
And that's exactly what Rep. John Lewis, the Democratic congressman who entered politics as a civil rights activist in the '60s, urged the nurses to do. Lewis was meant to be the conference's closing speaker. But, because of the election, he remained in Washington, D.C., to strategize about the administration to come.
It was a disappointment to the audience, many of whom had lingered on the last day just to see him. He did record a video for the assembled nurses, though. As researcher Dennis Flores introduced the video, images of Lewis's life flashed on the screen: images of him walking on the Edmond Pettis Bridge in Selma, Alabama, as a grown man; images of him doing the same during the Montgomery bus boycott; images of sit-ins in the 1960s and a sit-in on the House floor this summer on gun control; images of protests and of marches.
"You are on the frontline to help those that need help," Lewis said in the recording. "I say to you, as you continue to do your great and good work, never give up. Never give in. Never lose hope. Continue to work, and you're doing the good work, the necessary work. And sometimes you may be feeling down and lonely and isolated. But hang in there. Keep the faith, and keep your eyes on the prize."
ANAC president Farley reminded the group that nurses can be part of that collective push.
"We are an organization that lives our values. Our values include diversity in all forms: Our values include diversity of political affiliation. They include non-discrimination against any and all people," he said. "It's up to us as a community, as nurses, as people who really embody diversity in all of its forms, to make sure that we keep the fires burning on that diversity."