Regan Hofmann is a HIV-positive woman and an internationally recognized authority on HIV/AIDS. She is currently the Policy Officer for the Washington Liaison Office of UNAIDS and serves on the board of amfAR (the Foundation for AIDS Research). She was a U.S. delegate to the United Nations High-Level Meeting on HIV/AIDS in 2006 and 2011.
BPR: Can you talk about your diagnosis with HIV and how this has come to shape your life’s work?
RH: I was diagnosed in the mid 1990s, and it was a complete shock and surprise… At that point in my life, I didn’t feel that there was any reason to be concerned that I might be exposed to HIV, so when I got the news that I was living with the virus, it really just stunned me.
The stigma surrounding the disease was such that I didn’t feel I could tell anybody. The people whom I told out of necessity and my family were the only ones who knew for ten years. The stigma was incredibly powerful from the get-go. I was also diagnosed at a time when it was still unclear if anyone could actually survive HIV for any length of time, even with the drugs that were available. I went from believing I might only live a year or two, as my doctor suggested might be the case when I was first diagnosed, to having a radically different outlook on life when I realized I might actually make it.
There’s a phrase some people use in association with HIV: “survival guilt.” Millions of people living with HIV, who contracted HIV before the lifesaving medications were available, weren’t saved. I was diagnosed just after the new medicines came out. Had I contracted HIV years before I might not have made it. It’s very painful to think about the people who were so close to getting the drugs who didn’t make it. I have tried to turn my “survivor guilt” into “survivor responsibility.” It’s an impetus to work hard so that other people don’t find themselves in the same situation as those who couldn’t access the medications.
BPR: Would you say that stigma surrounding HIV still exists today or has it been mitigated?
RH: We know so much more about the disease, and we know how to prevent its spread. I think most of the people who know the scientific facts about the virus fear it less. And fear is what drives stigma. Stigma is about making something “other,” pushing it away from you because it frightens you. So the key to undoing stigma is educating people and making them feel comfortable. Helping people understand the science of AIDS is the key to doing that.
I do think the stigma remains intense. Because the disease is sexually transmitted and because many people are uncomfortable talking about sex, the very idea of the disease makes people uncomfortable. I always remind people that this is a disease of the immune system. It can be transmitted sexually, but it is actually not a sexual disease. I think the issue is still that people assume that people who have contracted HIV had to do something unusual to get it.
Stigma is a huge hurdle for people. It prevents people from getting tested, from seeking care, from accessing treatment, and from adhering correctly to treatment. If you look at the care continuum — the arc of activities includes diagnosis, linkage to a health care system, getting on antiretroviral treatment, and adhering to treatment so that you can achieve viral suppression — there are many places along that arc where people fall out of care. And a lot of the reasons that people do have to do with stigma.
As we have found more answers on the scientific front, as we’ve gotten better programmatically and technically at being able to implement the prevention and treatment responses that we know work, it has called into sharp relief the power of stigma. If it were not for the stigma, many more people living with HIV would likely be aware of their HIV status. Currently, 19 million people worldwide do not know they are living with HIV.
When people are aware of their HIV status they are far less likely to transmit the virus. So getting people tested is a really helpful way to slow the spread of HIV. When we look at the goals we have for the work going forward, a major cornerstone of the work is reducing AIDS-related stigma and discrimination.
Think back to breast cancer. When Betty Ford was diagnosed with the disease, the network news stations struggled to report it, because they couldn’t say “breast” and they couldn’t say “cancer” on the evening news. They did, because she asked that they did, and that was one of many moments that advanced people’s thinking around that particular disease. Like HIV is today, breast cancer was initially stigmatized because it was associated with a sexualized body part—a woman’s breast. It took years of talking about breast cancer to get people comfortable with it. But once people became comfortable discussing it, a phenomenon that was linked to better education, awareness and understanding of the scientific facts, the rate of breast cancer fatalities declined significantly. Once many women got the message that early detection equals survival, it changed the game. It also helped that it became a generally socially acceptable topic, as that allowed people to encourage their friends and families to get screened.
We need to achieve a similar thing with HIV. We need to turn this on its head and help people understand that the best way they can protect themselves from the virus is to destigmatize it so that people who might be at risk for having it are comfortable coming forward and getting the care. Ironically stigma and discrimination, which are born out of fear, are exacerbating the problem and heightening the risk that HIV will continue to spread.
BPR: In your opinion, will we have an HIV/AIDS free generation?
RH: I do believe we can have an AIDS-free generation. I believe it is possible for all people who are living with the virus to be are aware of their status and have the life-saving antiretroviral medication that they require. It will take urgent response in this moment, significant additional resources and sustained, and fresh political will on the parts of world leaders.
UNAIDS introduced an approach known as the “Fast-Track” approach, that has been widely embraced by many working to end AIDS. It is based on modeling that shows that meeting certain targets for prevention, treatment, and the reduction of stigma and discrimination by 2020 puts the world on a path to achieve the end of AIDS as a public health crisis by 2030. We can do this, with the tools we have in hand and with the knowledge that we’ve gleaned from 30 years of trying to stop the spread of HIV.