amfAR, The Foundation for AIDS Research

Living Out Loud with HIV—An Interview with Regan Hofmann


Editor-in-chief of POZ magazine and, the leading publication in the U.S. for people living with and affected by HIV/AIDS, Regan Hofmann joined amfAR’s board of trustees in September 2009. Her recent memoir, I Have Something to Tell You, chronicles her experiences as a woman living with HIV.

Regan Hofmann
Regan Hofmann at a 2008 amfAR press briefing on women, HIV, and stigma.

amfAR: What prompted you to become involved with amfAR’s work by agreeing to join the board of trustees?

Regan Hofmann: After four years at POZ, I’ve developed a broader understanding of the devastating implications of this disease and I’ve realized that, despite our best efforts to treat the virus and wield effective preventive measures, we’re not going to treat or prevent our way out of this pandemic. We absolutely have to find a cure. With the courage to pursue the cure unabashedly, its incredible staff, its prowess at garnering funds and its discerning placement of that funding to support promising scientific developments, amfAR is uniquely positioned to do that.

amfAR: As a journalist and as editor-in-chief of POZ, you regularly speak of your experience living with HIV. How has this shaped the way you think about the epidemic?

Hofmann: I’m in the unique position of being able to tell people what we’re up against.

Some liken HIV to a chronic disease like diabetes. That can be true, but only given the right circumstances—only if you can overcome your fear of stigma in order to access medical services, if you can afford health insurance and medications, and if you have strong emotional support. There are a lot of “ifs.”

Living with HIV feels like I have swallowed a hand grenade with the pin pulled out. Though the current treatments are keeping AIDS at bay in my body, we don’t know what the long-term effects of the treatment will be, nor do we know whether it will work forever.

amfAR: Is HIV different for women?

Hofmann: Absolutely. Many women are caretakers—supporting themselves and others. There’s a real fear about how their HIV status will affect their children, their spouses, their friends and family. I went through some of that myself, worrying, for example, that my nephew might be teased because his aunt was HIV-positive.

Also many medical professionals still see HIV largely as a gay man’s disease. So they’re not always looking for symptoms in women. That’s borne out by the numbers, which show many women being diagnosed with HIV and AIDS simultaneously, which indicates we are detecting HIV much later in women.

Living with HIV feels like I have swallowed a hand grenade with the pin pulled out.

amfAR: POZ enables people living with HIV to make their voices heard. What concerns are you hearing these days?

Hofmann: It’s important to remember that people with HIV have many of the same concerns that others do: these days, it’s the economy. Many people are concerned about paying for care and treatment, even people who have been able to do so for a long time.

There is also concern about the federal government’s commitment to funding HIV/AIDS programs. There’s hope that health reform will address the concerns of the HIV/AIDS community, but no one really knows.

Stigma continues to be an enormous problem for people living with HIV. It really impedes their ability to talk about their status and seek the care and support they need.

amfAR: In your memoir, you describe this stigma as “crippling.” Do you think we’re making any headway in diminishing it?

Hofmann: Based on my personal experience and what I’m hearing from others, honestly, I don’t think the stigma around people living with and affected by HIV/AIDS has dissipated. True, people have a better handle on how HIV is transmitted. There’s less generalized hysteria around being in the presence of people with HIV. But I think people still judge those living with HIV and believe that they did “bad things” in order to get it.

People fear the unknown. So if they meet others living with HIV and see that they’re just regular people going through life, it’s harder for them to view positive people as part of society’s underbelly or think of HIV as a virus that can’t affect them. The media can play a role as well, by sharing the stories of people living with HIV and providing accurate information about the virus.

amfAR: What gives you the greatest hope in the fight against HIV/AIDS?

Hofmann: The community of people living with HIV is one of the most resilient and impressive groups of people I’ve ever met. We’ve made so many scientific advances in recent years, and I do see a great deal of optimism within the community that we’ll solve this problem.

We’re getting closer to understanding how the virus works—and that’s due in large part to the work of organizations like amfAR. There are many brilliant and committed people working to solve this problem and raise the money to keep funding the research. I’m encouraged by the number of people who understand how important this is—including the team at amfAR. If anyone is going to find the cure for HIV/AIDS, they will.