How Has Our View Of HIV/AIDS Changed In Last 30 Years?

What were the early years of HIV/AIDS like in San Diego? How has our view of HIV/AIDS changed over the last 30 years, and what are the greatest current challenges to preventing the spread of the deadly disease? We speak to KPBS Health Reporter Kenny Goldberg about his three-part series on the HIV/AIDS pandemic.

Guest

Kenny Goldberg, KPBS Health Reporter

Read Transcript

CAVANAUGH: This is KPBS Midday Edition. I'm Maureen Cavanaugh. The world is in membership ways a very different place from the time in 1981 when the first patients with AIDS were identified in the U.S. there were no iPads no cellphones no Internet, and at that time the disease itself didn't have a name. Even though much has changed, HIV medical experts say too much has remained the same. KPBS health reporter Kenny Goldberg is here to tell us about his series exploring the 30th anniversary of the HIV AIDS epidemic. Kenny hello.

GOLDBERG: Hi, Maureen.

CAVANAUGH: How did the AIDS pandemic begin in the United States 30†years ago?

GOLDBERG: A group of previously healthy, young gay men in Los Angeles came down with a rare form of pneumonia. Then, within a month, a group of other young previously healthy young gay men came down with an unusually form of cancer. That was the beginning of what would be known as AIDS although they didn't have a name for it.

CAVANAUGH: What were the early years of HIV AIDS like here in San Diego?

GOLDBERG: I think they were like almost any other place, which is people were dying left and right. Nobody knew what they were dying from, what the cause of it was, it was mysterious, and it was terrifying all at the same time. And I spoke to the director of UCSD's Owen clinic. That is the busiest HIV AIDS treatment center in San Diego. It was founded in the early days of the epidemic. Chris Matthews who directs the clinic talks about what it was like in the first few years of the epidemic.

GOLDBERG: As I think back about it now, it's incredible what those early days were like because there was no Internet, there was no journal about this, there was no name for the disease. So we were dealing with something that was totally unknown.

CAVANAUGH: So medical people like doctor Chris Matthews have been dealing with this disease as so much has been discovered about it over the years. How many people has the UC SD Owen clinic treated since it was established?

GOLDBERG: Tens of thousands: Right now they have a patient load of about 3,000 people. It's far and away the busiest HIV and AIDS treatment center in town. There's no question about that. What doctor Matthews told me is a follow-up to his little cut there, in the early days of the epidemic, the average time somebody would last once they came into treatment was only six months. They didn't know what to do for them. They didn't even know what it was. So Matthews told me it was just terrifying, really.

CAVANAUGH: It sounds like a terrifying, scary time. I do remember the -- back then and nobody knowing what in the world was going on with these patients. Can you tell us -- can you encapsulate the way you do in your series the kinds -- the way treatment has evolved for HIV/AIDS over the last 30†years?

GOLDBERG: Well, once they identified the virus that causes AIDS, and once they developed a blood test to be able to determine who's infected, then slowly research began to develop and come up with some medications to try to treat it. The very first one that was at the time thought to be a game changer office a medication called AZT. It wasn't designed for AIDS treatments, but it was found that when an AIDS patient took it, it actually prolonged their life quite a bit compared to nothing. They had nothing beforehand. However, it ended up being very, very toxic. And they were giving high doses back then 'cause they didn't know what else to do. They still use the medication but in much smaller doses. As time progressed and they did more research, nay finally, I think it was in 1995, came out with these protease inhibitors, and these drugs taken in combination with a couple of other classes of drugs were able to control the infection in patients that took it if they were treated early enough.

CAVANAUGH: That's what we've come to know as the AIDS cocktail?

GOLDBERG: That's right. An AIDS cocktail is a number of different medication when taken in combination helps somebody control their disease just like a diabetic may take a couple of different medications.

CAVANAUGH: Even though this treatment has been remarkable, don't long-term HIV patients still have health struggles?

GOLDBERG: They definitely do. There's no tree lunch with HIV medications at all. While people with HIV can live a long, healthy life, and their life expectancy [CHECK AUDIO] have a greater likelihood of heart disease, liver disease, it causes changes to the body. If you've ever seen somebody who's been on HIV medications for a long, long time, they look different. It changes their face. They did look for gaunt and look like they have ultra muscular arms and thinning skin. And it really causes changes to the body. Not to mention a whole other number. Side effects.

CAVANAUGH: Although HIV can be controlled and people can live with HIV for many, many years, this is still a devastating disease. And I think that's part of what you address in a later episode of your series on the 30th anniversary of HIV/AIDS. For instance, there are still people becoming infected with HIV. How many people become infected with HIV every year?

GOLDBERG: In the United States , there's about 30,000 new HIV infections every year. That number hasn't changed much in over a decade. What that suggests and what I explore in the second part of the series is that these messages about have save sex, wear a condom there's evidence that these messages don't resonate anymore, especially not with young gay men who grew up after the epidemic began. They didn't see people dying of AIDS left and right like their parents did or the older generation. They have been sexually active only in a time where HIV is seen as a manageable condition. And I spoke to a young man who we'll call Gio. He's 24 now. He became infected when he was 21. And I asked him, what were you thinking back then? Why didn't you guys use condoms? Why didn't you practice save sex.

GOLDBERG: For me in my mind at the time was that I was -- I was enjoying myself at the time. I mean, I was having a good time. I didn't think about the potential risks involved. I was too busy feeling good.

CAVANAUGH: So you have people under 30 who haven't had the experience that older people have, basically thinking that, well, you know, I guess even if I get this disease, I can just take pills and it'll control it and not really recognizing how serious this is.

GOLDBERG: That's right. And there's a couple things going on. First of all, we know that the age group that has the most new HIV infections in the United States are under 30. We also know that there's a rise in syphilis among this population in San Diego and in other major cities in the United States. That suggests all of these things together suggest that people just aren't practicing safe sex consistently. And in my second episode as I mentioned, I explore that, and I talked to Ia researcher at UCSD who did some very interesting thing, Jim Zions, and he talks about how difficult it is to engender behavior change over big populations. It's one thing to talk about oh, you can wear a condom as an individual. It's one thing to say oh, okay I want you to practice save sex. But to try to change behavior on a grand scale is enormously difficult. That's one of the challenges in dealing with HIV.

CAVANAUGH: It must be so frustrating for people in the medical community who have been working with this disease for more than a generation now to see this turn of events, really, among people who can't have the experience of this as a deadly disease.

GOLDBERG: That's right. And without that view of it as a deadly disease, they really don't have the motivation to change or to practice safe sex.

Q. If you're looking at a death sent every time you have unprotected sex with somebody, that's another bag. But people don't see it that way. In the piece, I talk about the analogy with sort of the obesity epidemic. We all know what we need to do to stay fit, to eat right. How many of us do it? Let's be honest. And what I ask does society contribute to that? You can't pin it on an individual, per se. You have to look at the ask social norms around safe sex, and what are they? What do kids see on TV? What don't they see? It's a whole lot of things that combine to make this problem -- that's what from a reporter's standpoint is so fascinating about HIV and AIDS.

CAVANAUGH: In your review of the 30†years that the world has -- the United States has been dealing with HIV and AIDS, how this disease spread into different communities. You track that here in San Diego as well. And you spoke with a couple of women who found themselves in HIV/AIDS clinics and never expected to be there.

GOLDBERG: That's right. Originally it was thought to be seen as a gay man's disease. It then moved into the IV drug user community, then it began to move into communities of color, African American women especially in the southeast United States. And in my episode, I talk to an African American woman who was HIV positive [CHECK AUDIO] she didn't know what to do. Her doctor told her, well, once she got the diagnosis, well, you have about seven years to live. Get your act together. She didn't know what to do. And it wasn't -- it was only when she discovered some other women with HIV, she discovered some HIV support groups that she was able to rally and get behind the thought that maybe this is a survivable illness.

CAVANAUGH: What you've discovered I think in these episodes is that during the past 30†years, a lot of the stigma has been removed, there have been great new treatments, but unfortunately the rates of new infections seem to be holding at a certain, steady amount, and this is really frustrating medical officials. What are some of the strategies that are being used nowadays to encourage gay men and really everybody everyone to practice saver sex and to become aware of HIV AIDS in their lives?

GOLDBERG: One of the things that they're trying to do now, and you may have seen some billboards on it in San Diego, especially in Hillcrest, is to get gay men to talk about their HIV status with their partners. The thought is that if they're open about it, they can prevent the disease from spreading. And the thought is that if we get more of a discussion about HIV among sexually active people, maybe we can normalize it somewhat and get broader testing going on. And that's the element that I jump into in the third episode, which is a new study in San Diego run by a group called lead the way. This is a study that attempts to broaden HIV testing by going door to door and testing people in these two Zip Codes. And I went out with the crew a couple of weeks ago. They've just started this study. They went out with a crew a couple weeks ago, and spoke to David Rodriguez, who's a project manager, lead the way, and he talked about what they're doing in the field.

NEW SPEAKER: We've covered from Mission Hills to Northpark, today we're in Hillcrest. We have had a number of tests, we have had a number of people that complete the survey. But no negative reactions of people thinking that it's too out of this world to have an HIV test offered to them.

GOLDBERG: What they're doing is going 92103 and 92104 Zip Codes, Hillcrest other south park, a little bit of Mission Hills. They go door to door, knock on everybody's door, you want an HIV test? They have the mobile crew there ready to give them a blood test. A quick test, a rapid test, or they can get one that shows them if they have been infected as early as two weeks -- or as late as two weeks ago. The thought is that if we get more HIV testing and then link people who are positive to treatment and follow-up care, maybe we can control this epidemic.

CAVANAUGH: Another thing that you say is that a lot of people who have HIV don't know they have HIV.

GOLDBERG: That's right. The center it is for disease control says one out of five people who are HIV positive in the United States don't know their status. And these people are responsible for almost half of new infections. We have to deal with that. One thing I found out in my research is less than half than all Americans have ever been tested for HIV, ever. That number hasn't changed much in the past, 10, 20†years either. Now, the CDC issued guidelines back in 96 to -- they called for making HIV testing a routine part of medical care. You request in, get a cholesterol test, get an HIV test. It hasn't happened that way. While some doctors are trying to make it more normal, there's still a lot of stigma about HIV and a lot of fear about it.

CAVANAUGH: I think you're right about that too. So if anybody is not in the 92103, 92104 area codes where can they go to get a test?

GOLDBERG: Actually this program, the lead the way study also has a storefront on university and park where people can drop in and get a free, confidential HIV test. And they can also if they live in those neighborhoods and Zip Codes, they can be part of the study, formally. A person can go to their doctor and get an HIV test, go to free clinics. Virtually anywhere they draw blood.

CAVANAUGH: That's a good way to end a 30-year anniversary, HIV AIDS series. I've been speaking with health reporter Kenny Goldberg. The second and 30 parts of his series will run tomorrow and Friday on morning edition here on KPBS. Thanks Kenny.

GOLDBERG: Thanks a lot Maureen.