San Francisco Examiner - June 3, 2001

Dr. Michelle Roland: It's a disaster. We have people who are getting infected. We have people who are getting sick. We have people who are dying.

Is it a disaster for every individual person who has HIV? Well, on some level of course, they have a chronic illness.

Are a lot of people living pretty well with HIV? Yes, a lot of people are living pretty well with HIV. That doesn't mean that the crisis is over.

And from an international perspective? We're seeing entire countries, certainly entire communities, entire countries, probably entire continents on the verge of being wiped out -- Sub-Saharan Africa.

I mean -- do people have a clue 20 years into it? (She sighs heavily.) Have you looked at the African numbers?

They're losing entire generations. So you've got all these kids being raised with no parents, because their parents are dead with HIV. No teachers because their teachers are dead of HIV. No health care providers because their health care providers are dead of HIV.

Not only are you talking about a medical illness, you're talking about economic crisis and total destabilization. Total infrastructure devastation.

India is next. Russia is next. In Russia there's a huge epidemic of HIV among injection drug users and there's a huge epidemic of injection drug use.

If you get outside of San Francisco you see a totally different demographic of HIV. You see HIV infection among heterosexuals. I think it's always really important to remember that we do all this great research in San Francisco and we try to generalize it. And it's not necessarily generalizable to other populations.

Q: How are we doing here?

A: The people who are on drugs and are doing well, they're in the lucky proportion of people who are not experiencing the serious side effects. They're doing well.

The people who are on the drugs and are not doing well are people who are experiencing side effects from the drugs. Every individual is very different.

And there are millions of different kinds of side effects. There are symptomatic side effects -- things that interfere with people's quality of life -- many of which can be managed by changing drugs. And then there are more serious side effects where the internal organs are affected. Some of those are easy to manage and some of them are much more difficult to manage.

And then you have the people who have resistant virus. Most of us would keep those individuals on medications that they can tolerate because it looks like, even when we can't completely control their virus, we still get improvements in their immune system. The hypothesis is that the resistant virus is a less fit virus, so it doesn't cause as much damage. But some of those people, of course, will eventually develop problems and the medications are not going to be able to help them.

Then there's a group of people that have been called either long-term non-progressors or long-term survivors. The question has been, what's up with those people? Is it them? Is it their virus? Is it a combination of those things?

Q: Some of the things ACT UP-SF proposed ...

A: ACT UP SF is a profoundly dangerous group. (A very long and painful pause then she speaks very firmly.) I think there are a very small number of very loud people. They've turned it into this huge issue. Which is way, way, way, way bigger, than this teeny tiny little number of people. They've changed the epidemic of Southern Africa.

Q: ACT UP SF?

A: ACT UP SF has tremendous influence on (South African President) Mbeki. Now Mbeki doesn't believe that HIV causes AIDS and he's not letting any antivirals into the country because he doesn't believe that HIV causes AIDS.

ACT UP San Francisco, in my mind, in my opinion, are responsible for that.

Q: How did you become involved in AIDS treatment?

A: I first got involved in the whole HIV thing in 1986 when my first friend got sick and told me he had HIV. He died in 1987. At that point we were what felt to me like years and years and years into the epidemic, and I had a fair amount of guilt that I hadn't done anything about it. I felt like HIV was eating me up. I wasn't doing anything about it, but it was effecting me every day. So I got involved with the Shanti Project and I did practical support stuff. Within about two weeks of doing volunteer work I had the opportunity to participate in a march to Burrows Welcomes office.

Nineteen of us got arrested on the roof of (pharmaceutical company) Burrows Welcome protesting the price of AZT. This was before ACT UP or anything existed. I was involved in AIDS activism from '87. Got arrested there. Got arrested at the FDA around issues around accelerated access to experimental drugs.

It was somewhere along that experience that I decided to go to medical school. I never had any intention on going to medical school. I hated doctors. I thought they were arrogant. I thought Western medicine was really one-dimensional and didn't understand what was really important.

I come to my work as a professional, not at all with a professional background but with a total activist, advocate background and a very non-traditional upbringing.

It kills me when -- I mean understand when AIDS activists get pissed at me because that's their job. (She laugh with painful affection.) And I understood it when it was my job.

My job was to be more obnoxious than anybody else so people who were a little bit less obnoxious than me could do a little bit more work than they would've been able to do if I wasn't being so obnoxious. (She laughs painfully.)

It's very hard because that's still my role in my world. It's just my world isn't on top of buildings anymore. It's inside of them.

Q: Are you still making trouble?

A: Oh yeah. But in a much more productive way. I think back then, in the early days of AIDS activism, I was really angry and really hurt, and I felt very out of control. The one way I could be in control was by being smart and loud and pushy. It helped me to contain all those other feelings.

But you know we do mature, most of us, hopefully as we grow older, and things are not black and white. And I don't know ... almost a single enemy out there. Everybody who's working on this is working on it from their own perspective.

It might not be my perspective, but what they are contributing from their perspective I can't contribute, because it's not my perspective.

So there are very few people that I look at and say, "They're bad. Those are the bad guys. Those are the enemies." There are a couple of them.

And I certainly have criticisms of lots of our structures -- the pharmaceutical industry and all that kind of stuff. But life is not nearly as easy as good guys and bad guys.

Q: Do you ever find yourself on the verge of tears?

A: (Very quietly) A lot. I used to live in Africa. When I was a teenager I lived there for a year as an exchange student and I've spent a lot of time there since. That just breaks my heart completely, the tremendous suffering and fear and the hopelessness.

There people don't get tested because there's nothing they can do. In their minds there's no medicine. And we're not talking about antiviral medicines. We're talking about really basic stuff. So they don't get tested.

There people are victimized when they are identified as HIV positive. There's so much stigma. It reminds me of back in the olden days here, and probably what it's like a lot of places in the United States, where I don't venture very often -- huge amounts of stigma and anger towards the people who are HIV infected.

And then all these little kids. All these little kids with no dads, no moms, no teachers, no nurses, no schools, no water, no food, no homes.
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