As AIDS swept the world, AHF Founder Michael Weinstein fought back with science, compassion

Introducing ‘Lavender Pen’ by John Duran: a series of interviews with pioneering and iconic LGBT figures across Southern CA.    These interviews highlight individuals who have stood the test of time for more than 25 years.  John J. Duran has been an LGBT activist since 1979 – long before serving on the West Hollywood Council for 20 years.  These peer to peer interviews capture the history of LGBT Southern CA from one pioneer to another.

Thirty five years ago, Michael Weinstein was just a graphic designer and businessman who felt compelled to fight the discrimination of people afflicted with AIDS. Today, he’s providing 1.5 million people all over the world with cutting-edge medical care regardless of their ability to pay.As co-founder and president of AIDS Healthcare Foundation (AHF), Weinstein has turned the tide in the war against HIV/AIDS and the harmful stigmas attached to the disease. Part two of this series continues below.

Part One

Part Two

 I attended the International AIDS Conference in Durban, South Africa.

And I’d never been to South Africa. And like other people I had dumb ideas that it wouldn’t be possible to treat people there. There wasn’t enough infrastructure. That it wouldn’t be possible to treat people in Africa and elsewhere in the developing world.

The opening ceremony is in Durban and there was a lot of buzz about what President Thabo Mbeki was going to say, because he was an AIDS denialist and what was he going to do? And I know that Madeleine Albright was trying to get him not to say something wacky.

We went to the Rugby Stadium which was more like a Cirque du Soleil presentation than a scientific meeting. But he got up to speak and basically said that poverty causes AIDS, denying that HIV caused AIDS, and so a group of us walked out.

But then the next morning I was at the opening of the session and when I went back to my room the porter said that somebody was looking for me. When I got in my room there was a note that had passed under the door and it said ‘We’re local activists and we want to talk with you. We’re waiting for you down in the restaurant.’ So I went and I found them, and we were talking and describing how awful the situation was, and I said ‘Well it’s fine to come to a meeting, go to these sessions but I would really like to see what the situation is on the ground, so can we just rent a van or something and go out and look which we did. And then they said they really would like to have treatment be available. At that time only 50,000 people in the African continent were being treated out of tens of millions who were infected.

So then I invited them to come to the U.S., and as a result of that, we decided that we would set up a treatment site near Durban. So the problem was that the drugs cost $5,000 per person per year, so obviously it wasn’t very practical, because all we could do was a 100. So because we were doing better by that point, but not great financially, we committed to 100 there and 100 in Uganda.

At the time GlaxoSmithKline dominated the AIDS drug market at that time. So we sued them to invalidate their patent as a way of gaining leverage to get them to lower the prices, and it went on for quite a while, but ultimately they did and unfortunately the U.S. government also sided with the drug companies to prevent South Africa from getting less expensive drugs. So ultimately from where we started at $5,000 per year now we’re down to $75 for a whole year’S supply. So that was absolutely essential, the advocacy for that was absolutely essential. And so we first had a goal of 100,000 patients in care globally and then eventually we set a goal of a million, so right now inclusive of the United States we’re at 1.65 million.  

How many countries?

45 countries.

You changed the name AIDS Hospice Foundation to AIDS Healthcare Foundation in ’90.

I think it was 1990. So I think a lot of younger people won’t understand what those early days of AIDS were like. It starts in ’81. There’s no treatment and people’s life expectancy is 30 months in the beginning and there’s nothing to treat people.

So many people were just left to die or find a place to die. And if they were no longer associated with immediate family because they were gay, where could they go?

There were so many horror stories.

I remember this family came, it was the first time they had been there for a couple of months. The first time they came they asked for gloves rubber gloves and they were really just scouting out his estate and then when they left they just took off the gloves and threw them down on the desk.  We had a number of priests catholic priests who died, who had no place to go.

People said, ‘Oh that’s so depressing.’ It wasn’t. It was uplifting I mean there were a lot of crazy scenes that happened but actually in its totality it was really a place of love and of helping people to to heal and to maximize what life they had left.

That particular building was pretty small. They had all individual rooms but a little narrow hallway and there was not much common area. We allowed families or friends basically to have 24-hour access, so at one point we had Satan worshipers and they had a bat on the top of a spear and I said ‘No, no bats.’

Then a lot of times the Latino families held these vigils and so this one particular person they were just fifteen people in this like 8’x12’ room. And then there was a mother of a Middle Eastern man who was there who was flagellating herself.

Anything that could happen happened.

The other thing that was interesting that happened was that the people who said ‘When I’m ready to go, I’m ready to go’ — like Chris Brownlie, he didn’t wind up dying there but he spent a lot of time there. And Connie Norman died there.

But a lot of the people who said ‘I’m just going to let go’ involuntarily fought to stay alive.

There was a guy who said, ‘Look I’m not into this hospice thing. This is just the best place I could go to.’ I want every extraordinary measure, so the community had such an outpouring like for Christmas and Easter, these holidays. So caterers would come in just on a voluntary basis, and Easter was always a big day. So he had this beautiful spread for Easter lunch and this guy finished his lunch and he went up to his room and he lay down in bed and he crossed his arms over his chest and died — like he had just involuntarily decided this is a good day to die.

So amazing stories like that. 

I remember back in the early days of AIDS, Pacific Oaks Medical Group, all the gay doctors on the West Side were very much associated with MECLA, and West Side and Zev and that element and all that. But there didn’t seem to be anything comparable on the East Side or the South Side — groups of gay doctors. You think AHF stepped into that role? 

AHF has been different in the sense that we’ve always had a kind of universalist kind of a mentality. We never identified as being — despite the fact that we have a lot of people in leadership who are gay or lesbian — we didn’t identify ourselves as a gay organization.

I think what what we represented was sort of a degree of compassion and also just the fact that the word was out there that we really meant it when we said ‘regardless of ability to pay.’ But when we opened the clinics they were really M.A.S.H. units.

On average we lost about 25 percent of the people. If we had 1,000 clients at Hollywood at the beginning after about a year, 250 of them died. And then they were sick frequently. We opened the door in the morning and the walking wounded came in and you patched them.

When the treatments became available it changed because people were getting better but it was still a few years where it was very tough because the regimens were quite unforgiving. Take something with food, without food and in the morning at this hour that it had to be done on time and you had to take it every day and there were side effects and toxicities — it’s still pretty care-intensive. I would say until maybe 2003.

We had a project over in West Hollywood called the WeHo Lounge next to where Mickey’s is, and we opened it basically to promote treatment there. It was Treatment Equals Life. I held a workshop there in 1990 or ‘91. We had different pro workshops like that and the title was ‘Now there’s hope — Do I really want to live?’

And there were about a dozen men in the group and we asked them on a scale of zero to ten. And I was shocked that the response averaged about a five. So people said, ‘I spent all my money, I’m so so geared towards dying that I don’t know what to do.’

So now we’re having to recreate ourselves again, because now it’s the clinics and the care, it’s more like a pit stop. People are gratefully living their lives without HIV looming over them as large as it did.

And so we’re changing the whole design — getting rid of the waiting room,  having it more like an open kitchen, where the staff is there and putting people in the exam room and everybody goes to them and doing more stuff through telehealth.

You brought up Richard Polanco which is the name I know because I knew Richard. But I think that when people look at politicians who responded to AIDS, a lot of people automatically go to Henry Waxman, who is I think Chair of Appropriations and the Congress, but they rarely go to some of the other politicians here besides Polanco. Or maybe you just want to talk about Polanco. Are there other elected officials that you think responded early on that don’t get any credit for what they did?

Well for what we were trying to do Polanco was #1. I mean it was legislation after legislation that we passed. I mean there wasn’t even a license for residential hospice in California when we started, and we had to have that in order to get reimbursed. And there were many other things. So he was big. Diane Watson, huge supporter, she accompanied me to South Africa. She was a congresswoman and she was the chair of the Senate Health Committee, so that was a powerful position. So she was great. Maxine Waters, a huge supporter. Gray Davis did a lot.

It’s interesting, these are all women and men of color that you’re identifying. I think they often get overlooked. You talked about clergy too — what was it like with Cardinal Mahoney then?

I never really had any contact there. There was a Catholic ministry diocese, it was an AIDS ministry within the Catholic Church and they did some good work but no, there was never really  anyone a la Pope Francis. There was never that kind of an outreach. 

He was a conservative, quite conservative, and and there were other agencies within the church, like St. Mary’s and other places where they provided certain services but it was never big. I mean it’s interesting because not just the Catholic Church but in general, it was an effort to reach people through HIV education through the clergy but it never really had the impact.

For example many projects around the black church but it never really took hold because it was always this contradiction between preaching fire and brimstone from the pulpit and then trying to say you should love and take care of people living with HIV. It just didn’t really work out.