Fear fuels stigma. That’s why Regan Hofmann has made it her mission to fight fear. She’s been doing so since she came out, appearing on a 2006 cover of POZ above the words “I am no longer afraid to say I have HIV.”
It was huge milestone. After all, she had been writing a regular column for POZ since 2002, but had always hidden behind her pen name, Anonymous. Now she was taking over the magazine’s editor in chief position and needed to step into the spotlight.
Ten years later, Hofmann admits she wasn’t entirely honest back then. She had still been afraid: “My fear of HIV-related stigma and how that would impact my family, friends, and myself was so powerful, initially, that for ten years after my diagnosis I only told a tiny group.”
With the POZ cover she was forcing herself out of the closet. “I hoped if I told myself I wasn't afraid, maybe I wouldn't be,” she tells Plus now, reflecting back on her decision. “I made myself act in spite of my fear.” It’s not the absence of fear that makes someone brave, it’s being afraid and still choosing, as Hofmann did, to do something about it.
One of those things was confronting her own feelings of shame and guilt about having contracted the virus. “There is nothing shameful about having HIV,” she proclaims now. “I came to realize that I didn't do anything for which I should be vilified. After all, what had I done? I had unprotected sex with someone I trusted and cared for. I did what each of our mothers have done. That the virus was present when I made that choice and not when others did doesn't make me a bad person — it makes me a biologically unlucky one.”
According to the CDC, at the end of 2012 an estimated 1.2 million people 13 and older were also unlucky enough to be living with HIV in the U.S.. By coming out about her status and “joining the ranks of so many others who spoke openly about having what is nothing more than a viral infection,” Hofmann says she hoped to “help change the public's perception of people living with that virus. People with HIV shouldn't suffer in fear and isolation; they should be given the same kind of love, support, and care as anyone who is fighting for their life against a deadly virus."
In many ways, Hofmann succeeded: her coming out did change perceptions. After all, she was a young white woman from a well-to-do upbringing. She broke the mold by showing the world that HIV isn’t solely an urban, gay men’s disease, but a universal one — a journey beautifully covered in her memoir I Have Something to Tell You.
Published in 2009 by Simon & Shuster, Hofmann’s memoir chronicles her first decade of living with HIV. In the ensuing years since her late 1990s exposure, being HIV positive has made her tougher, braver and more grateful: “I appreciate life in ways I am sure I would not have had I not been so acutely aware of my mortality,” she says. “But even today I’m not totally immune.”
Since her departure from POZ, Hofmann, now 49, has made a tremendous impact on HIV policy, first as a member of amfAR (The Foundation for AIDS Research)’s board and second as a policy officer in UNAIDS (The Joint United Nations Program on HIV/AIDS)’s U.S. Liaison Office in Washington, D.C.; where part of her job is to help lawmakers on Capitol Hill — and members of the executive branch (aka the President and his cabinet) —understand what is needed to best address AIDS.
These days she frequently and fearlessly stands in front of Congress, the Obama Administration, or the nation’s TV viewers and discloses her status.
“After ten years of being open about the fact that I am living with HIV, I am finally, truly, comfortable talking with anyone about it.” She’s slayed her fears, but admits, “It took me years to get to this place.
And she still has to deal with the impact of stigma and ignorance. Recently, Hofmann faced an HIV-phobic individual in her neighborhood. This person was talking to others in the community about her status, attempting to disparage her, and frighten people away. Luckily, she says, being public about her status meant most people already knew and were willing to stand up to the instigator. Nonetheless, Hofmann says the incident “was a painful, personal reminder that until we destigmatize HIV, it can be used as a weapon.”
In the coming year, Hofmann will be working with other advocates, hoping to help inspire (and inform) the next President — Hillary Clinton or Donald Trump — in their response to HIV at home and around the world.
She has a clear understanding of what needs to be done. “We need to intensify research efforts in order to find a vaccine and the cure,” she says. “While these things seem obvious to those of us who live with HIV or who work in the field, there will soon be new leaders in office who may not be aware of the tremendous crisis we still face,” she acknowledges. “We’ve made incredible headway and 17 million people with HIV are now accessing treatment, the rate of AIDS-related deaths has declined, and the rate of new HIV infections has slowed. [However], we still have 19-plus million people living with HIV who are not accessing treatment, we still have too many deaths and too many new infections, including in the U.S.”
Still, Hofman believes we “have a shot at ending AIDS as a public health threat by 2030,” But only if nations like the U.S. ” increase their support to the Global Fund to Fight AIDS, TB and Malaria and to their own domestic responses.” And the task ahead is also daunting requiring us to “reach everyone, everywhere at risk for and living with HIV and [to] find a vaccine and the cure.”
From her years as an aspiring writer from Princeton, New Jersey, to writing and editing POZ and writing for Huffington Post; from becoming a full-fledged policy badass, to launching her own global health strategy consulting firm; Hofmann is changing media perceptions by being in charge of the message: in speeches and articles and columns and policy briefs.
On being recognized as one of Plus magazine’s Most Amazing HIV-Positive People of 2016, she says she’s humbled by being “recognized along with so many people who inspire and motivate me to do more. Hopefully, lists like these, where people get to know us, help the general public see HIV as they should: as a bad thing that happens to good people.”
A continuous spokesperson, when she has time she still continues traveling, nationally and internationally, speaking to audiences of all kinds. And, as promised when leaving POZ, as a policy officer she is even more directly involved in the development and implementation of the solutions needed to stop the spread of HIV around the world. But first comes the stigma around it.
“If HIV carried no stigma, more of us living with HIV would know our status and access to the treatment that not only keeps us healthy but that also suppresses our viral loads so we are virtually non-infectious,” Hofmann argues. “Those who contribute to HIV-related stigma undermine our ability to resolve the pandemic. As stigma is largely fueled by fear, we must continue to educate people about the latest scientific facts to help them move from fear to compassion.”
(Editor's note a previous version of this profile mistakenly suggested Ms. Hofmann had attended Princeton; she attended Trinity College in Connecticut.)