Regan Hofmann has been an HIV advocate and educator for the last 15 years. But despite her incredible work as an activist, she says she is constantly reminded of the work we all must do to combat stigma.
Hofmann spoke to Plus about a recent injury she experienced after a car accident. The attending physician entered the exam room and asked, “How did it happen?” As she began to explain the details, the doctor interrupted and said, “No, the AIDS...”
Not only did the physician use ignorant and improper terminology (Hofmann is HIV-positive, she does not have “the AIDS”), but they seemed more curious about her status than with her injuries, which were in need of immediate care.
“He seemed so surprised that I was living with HIV, it distracted him from my other 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 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.”
Hofmann’s work as a policy officer for UNAIDS’s U.S. Liaison Office in Washington, D.C. and at amfAR, of which she’s been a member since 2009, has given her an incredible platform to speak for the underrepresented.
This particular incident, she says, reinforced the need to continue fighting stigma and educating people on the facts: one in four people living with HIV are female, yet that is not often well understood by health care providers.
Doctors rarely recommend to females that they need get tested, says Hofmann, who was also one of Plus’s most amazing HIV-positive people. “We need to help more health care providers become aware of the fact that women are at risk for HIV. 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.”
Hofmann says getting to the place where she is today has been a journey, and often a very difficult one. Even though she’d been writing a regular column for POZ magazine since 2002, she did so anonymously. Then in 2006, when promoted to editor in chief, she bravely decided to officially come out HIV-positive on the cover with a headline reading: “I am no longer afraid to say I have HIV.”
Despite this very public declaration, Hofmann says at the time it was not entirely true. Like most people living with HIV, 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 and the struggles she has experienced will help other women rid themselves of the fear and shame associated with the virus. “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.”
She continues: “The less we 'exceptionalize it,' the greater the chances that one day, it 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, 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.”