Regan Hofmann, one of our Most Amazing HIV-positive People of 2016, has been an HIV advocate and educator for the past 15 years. But she’s still regularly reminded of the work that remains. She recently sought medical attention following an accident. The attending physician asked, “How did it happen?” As she began to describe the car crash, the doctor interrupted.
“No,” he said. “The AIDS?”
Not only was the physician ignorant of proper medical terminology (Hofmann is HIV-positive, she does not have AIDS), but his curiosity about her status kept him from providing the immediate care she needed.
“He seemed so surprised that I was living with HIV, it distracted him from my injuries,” says Hofmann. “The fact that people focus on how I got HIV speaks to the disbelief that ‘normal’ women, or people, get HIV doing ‘normal’ things. There is this sense that you [must] have been doing something bad or unusual to contract the virus. The bottom line is that I contracted HIV doing something everyone’s mom has: I had [condomless] sex with someone I cared for. That the virus was present when I made the same choice as millions of [women] do every day, doesn’t make me a bad person, it makes me a biologically unlucky one.”
The former Poz editor is now a policy officer for the U.S. Liaison Office of UNAIDS and a board member of amfAR (since 2009), two positions that have provided her a platform to speak for the underrepresented. Her experience with the clueless doctor reinforced the need to educate people about women and HIV: One in four people living with HIV are female, yet health care providers rarely seem to recognize that, or recommend women get HIV tests.
“We need to help more health care providers become aware of the fact that women are at risk for HIV,” Hofmann says. “But until that changes, women need to be agents of their own health. When you go to your doctor for your annual exam, ask for an HIV test. If your doctor [says] you don’t need one, ask to get one anyway.”
Visibility of women living with HIV is critical, but Hofmann acknowledges she — like many poz women — originally struggled with being so open about her health. Even though she’d been writing regularly for Poz magazine since 2002, she initially did so anonymously. But when she took over as the publication’s editor in chief, she officially came out — on the cover, with the headline: “I am no longer afraid to say I have HIV.”
Despite this very public declaration, Hofmann admits now that it wasn’t entirely true. She continued to struggle with the fear and shame related to social stigma.
“There is nothing shameful about having HIV,” Hofmann says now. “I came to realize that I didn’t do anything for which I should be vilified.” She hopes being open with her story will help other women rid themselves of the fear and shame she once felt. “There’s no reason anyone with this condition — let alone any medical condition — should suffer in fear and isolation. Everyone affected by HIV deserves love, support, encouragement, and proper healthcare.”
Hofmann says she deeply appreciates the bravery of people living with HIV who choose to be open about their status, but respects and understands that this is not an option for many. “I only was able to do it because of all the amazing people who came before me who paved the way. But we need to continue the trend. The more [people] who come forward, the more people will realize that HIV is just a virus that can affect anyone.”
Hofmann adds, “The less we ‘exceptionalize’ it, the greater the chances that one day, [HIV] will shed its stigma, as has been true for breast cancer. Having a cure will help. AmfAR is working hard on finding one through our Countdown to the Cure campaign. But until we get there,” Hofmann says, we need to help people understand that HIV can and does happen “to men and women, girls and boys, all over the world. And, that when people are aware of their status and on treatment, they are healthy and non-infectious, so there is no need to fear or stigmatize them.”