My Life with HIV
LUKE BURBANK, host:
Well, tomorrow is World AIDS Day, and the U.N. has released some data that is pegged to the event. The survey found that of the 3,500 people interviewed, one in four believe the problem is, quote, "greatly exaggerated." Yeah.
So what is the state of HIV/AIDS today exactly, and what does it actually mean for your life if you have the virus here in 2007?
Well, joining us is Regan Hoffman. She has been HIV positive for 11 years. She's also the editor in chief of Poz, a magazine that chronicles the HIV epidemic. Hi, Regan.
Ms. REGAN HOFFMAN (Editor in Chief, Poz Magazine): Good morning. How are you?
BURBANK: Great. Thank you very much for coming on. Probably a busy week for you, I guess, leading up the World AIDS Day, running a magazine called Poz.
Ms. HOFFMAN: It is. It's been a very cutting week.
BURBANK: Well, maybe moving back a little bit, take me through your average day from when you get up to when you go to sleep. How much of it is related to the fact that you have the HIV virus?
Ms. HOFFMAN: Well, I'm in a sort of unusual position because I work for a magazine about HIV/AIDS, so I think about it pretty much all the time.
BURBANK: Right. But physically, I mean - are you taking medicine all the time? Are you on a weird schedule?
Ms. HOFFMAN: I am. I've been on medication since I was diagnosed in 1996, and it has changed over the years. Today, I only have to take three pills, and I take them once a day before I go to bed. So that's a real progression in terms of treatment.
You know, in the very beginning, when I was first diagnosed, I had to take many, many pills at different times of the day, with or without food, so it's a much more complicated regimen, which made it much harder to take the pills.
And one of the things that's important for people living with HIV is adherence. If you don't adhere to your medication, you can develop resistance. So we've come a long way in terms of treatment, but there's still side-effects of the medication. And it does still make you think about whether you're going to live or die every time you take your pills.
BURBANK: When you first found out that you had HIV, I mean, what went through your mind?
Ms. HOFFMAN: Well, I was shocked because it was 1996, and I'd never heard of another heterosexual woman who had contracted the virus. So quite frankly, I didn't know what to think. I was afraid I would die. I was afraid I couldn't have sex. I was afraid I couldn't have a child. Luckily, all of those things have changed in the last 10 years significantly.
But I think one of the things that's important for people to realize is that AIDS is still a very, very serious disease. And what we're seeing now in the United States is a large number of new infections with young people because I think we've done almost too good of a job of convincing people that this is a manageable, chronic condition. AIDS is a very serious disease, and I think that people need to remember that it's obviously something that you don't want to get.
BURBANK: I mean, this, I guess, was a question I had for you which sounds very odd, but is it almost like somebody like Magic Johnson has been kind of bad for your cause because he's so healthy - obviously we want that for him - but you look at that and you think, oh, I guess this is just something you take a pill for?
Ms. HOFFMAN: Well, you know, Magic's been a great, you know, a great force in raising awareness for HIV/AIDS. I think that people do need to realize that anyone who has HIV can, at any time, become sick. And yet, at the same time, people need to remember that if you get diagnosed early, after you contract the disease and you have access to care -and I think, also, very important to point out is support - emotional support. I've had an incredibly supportive and loving family. And I've also had the privilege of being able to come out and talk about having HIV in the context of, you know, Poz magazine and the work that I do.
So, you know, you can be healthy, but you can get sick. And, you know, it's very different for every person. And there are a lot of people who really, really struggle with the stigma around the disease, and that prevents them from getting treated or getting care. And there are a lot of people who can't afford health insurance or treatment, so there are a lot of people living with HIV in this country, even in 2007, who are not healthy.
ALISON STEWART, host:
So, Regan, when you're out and about in the world, or, say, you're in a cocktail party, or you're in some sort of event, or maybe you're just in the grocery store, what is the most ridiculous thing you've ever overheard someone say about HIV or AIDS?
Ms. HOFFMAN: I think the most ridiculous thing I ever heard someone said that I used - that I made this up, that I said I was HIV positive to get press or to get attention.
STEWART: Wow. Somebody said that to your face?
Ms. HOFFMAN: Somebody said that to my face, and I said, you know, I think I would have picked a different disease if that were the case. But people also still, in 2007, don't understand how you can get this disease. I think there's still - we've done a great job of making people aware that you can't get it through casual contact, you can't get it through hugging or kissing or sharing someone's soda, but deep inside, people are still reluctant to believe that.
And education is really, really important. People need to educate themselves and understand the facts, so that they, you know, are not afraid of people living with HIV, and so that they're also not afraid to go and get tested themselves.
I think the largest misperception for people in America is that they are not at risk for HIV. We have more people living with HIV today in America than ever in the history of this disease, so the odds of you contracting it are higher. And I think people think that you have to do extraordinary things to contract it. One active, unprotected sex, no matter who you are or who you're with, what's your race or color or gender or sexual orientation, you're at risk for HIV.
BURBANK: Regan, we're talking about your life in the United States living with HIV, which, obviously, has been a real defining thing for you, but this doesn't even begin to scratch the surface of somebody living in, you know, say, Africa or another developing part of the world who has no access to medicine. I mean, it must be incredibly bleak for a lot of people.
Ms. HOFFMAN: It is. I traveled this summer to the Far East. I was in Taiwan, Vietnam and Australia, and I saw firsthand what it was like to be a person living with AIDS, for example, in rural Vietnam. And our country's done a really great job - we've committed $30 billion through the President's Emergency Plan for AIDS Relief. And we are helping a lot of foreign nations deal with AIDS.
But there are still the issues of getting people to come forward for care and treatment even in places where it's possible to get the pills and the care to them. The stigma is really debilitating. People are very afraid to admit that they have HIV or to go anywhere where they could get care, so we have to fight the stigma, internationally, to help people, you know, have the courage to come forward.
BURBANK: Your whole life, professionally, I guess, at this point anyway, and certainly a large part of your personal life has been totally shaped by the fact that you have HIV. If you could click your heels and not have the virus, would you?
Ms. HOFFMAN: You know, that's a great question. It's given me - the answer is yes. No one should have HIV. But I will say this, this disease has introduced me to some of the most extraordinary people I know in the planet, and it has given me the opportunity to appreciate my life in a way that if I hadn't had the acute sense of my mortality, I'm sure I would never have appreciated it as I have.
BURBANK: Regan Hoffman, editor in chief of Poz magazine, also someone who's been living with HIV for the last 11 years.
Regan, thank you. Good luck and good health to you. And, you know, I guess, have a productive day tomorrow for World AIDS Day.
Ms. HOFFMAN: Thank you so much.
STEWART: Thanks, Regan.
Ms. HOFFMAN: Thank you. Bye.
NPR transcripts are created on a rush deadline by Verb8tm, Inc., an NPR contractor, and produced using a proprietary transcription process developed with NPR. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.