Lessons of AIDS epidemic were forgotten when COVID hit, says AHF’S Michael Weinstein

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

Part Three

Let’s talk about ACT UP. Because I know you identify as an activist along with all your many titles. Were you out on the streets even before AIDS? What were you protesting? 

I mean I go back to the center here in 1972 and it was on Wilshire and Union down by MacArthur Park. I go back in my teen years to the fighting the war against Vietnam and also in civil rights, fair housing. 

Was that back in New York? So you’re a teenager out on the streets protesting the Vietnam War. Where did that come from? Most teenagers are worried about other teenagers; they’re not out on the street. 

So I was kind of nerdy but there was an anti-war campaign in the neighborhood I grew up in Sheepshead Bay in 1966. So a friend of mine, another nerdy guy, he and his brother were imagining the campaign and he invited me to get involved in that.

Then I went to see another name from the past at town hall. I went to hear Wayne Morse, a former senator from Oregon, speak and that’s how I got involved in it.

And then in my neighborhood there was a big open housing battle in a neighborhood next to mine on Coney Island and to fighting for not to displace people who lived there in favor of these middle class developments. 

So you were a housing advocate?

I was back when as a teenager.

My father — I don’t know what possessed him to go along with this — but he had a big station wagon and we loaded it up with blankets and such, and we broke into one of these buildings and we occupied it for quite a while actually. And so it’s interesting because you’re talking about the affinity we had to people of color at that period of time.

I was 15 and I was often the only white person in the room. Also I somehow rather bamboozled my parents because they thought I was going with my cousin to the Democratic Convention in Chicago in ‘68. But that was really an eye-opener. 

So you were you at the ’68 conference, how old were you?

I was 15. 

Oh my God to be there for the Chicago Seven and Mayor Daley and all that great history — that’s amazing. 

My cousin was a lousy chaperone. He was much less responsible than I was and after the first day I never saw him again. But I was a supporter of Eugene McCarthy. And so my parents felt I’d worked so hard for that that I should be there. They should allow me to be there. So yeah that was a tremendous radicalizing right event. So then flash-forward 20 years. ACT UP is officially born in 1987 out of the March on Washington meeting. That was the first meeting, an organizing meeting in Washington of sort of an affinity group of people from L.A. and there were some people there from other parts of the country. 

So then people started meeting here in L.A. when they got back. There’s a lot of romancing done about Larry Kramer and ACT of New York, but there’s not a lot of folklore around ACT UP Los Angeles. But I think it is just as important to talk about those early days. Well a couple of things. First of all, all of the AIDS in LGBT history discriminates against L.A. 

 I agree with you totally, it’s all New York and San Francisco As if L.A. did nothing, right?

What I think was interesting about L.A. was L.A. participated in the agenda of of the national act up in terms of particularly in terms of drugs in terms of getting drugs approved quickly.

But the primary thrust — and I think that I made a significant contribution to this — was really about caring for people. It was a battle over getting a clinic at the big county hospital, getting an AIDS ward and such that was kind of the focus and I think that was really good and important because people really didn’t have care. When you’re talking about translating this to a younger generation I think it’s hard to to communicate.

And it’s a little bit like my father talking about the Depression, it’s really hard to communicate, first of all, how callous the reaction from a lot of people was — from politicians and others. I mean it makes COVID look like a picnic.

It was very typical on a weekend to be going from one hospital to another and you had to decide whether in terms of memorials, could you get by without going to support a person because so they weren’t that close to them? Because otherwise you’d be going to memorials constantly. It was just a period of time at the end of the ‘80s and beginning of ‘90s where it was just as if AIDS was a terrorist and you didn’t know where it was going to strike.

I knew several people who got sick and died three weeks later. You’d have a Thanksgiving gathering or you’d have Rolodexes and just year after year people would be scratched off the guest list or written out of the phone book.

I had no health care background. I had no management background. I didn’t think of myself as somebody who could particularly look death in the eye. I don’t know whether I made the choice or the times chose me, but in a weird kind of way, I would say that despite it being like a nightmare without end, in another way it was a creative adventure. In way there was a selfish part of it that enabled me to contribute and to be creative in ways that I don’t think I ever could have imagined. 

I think you have critics who say you’re a bully, you’re strongly opinionated, you’re arrogant. I mean I’ve heard them all. I’ve had some similar things said about me. But but having heard all those criticisms, what do you think people don’t understand about what drives you? I don’t think it’s fame. I don’t think it’s money. 

I mean I have my accountant saying that I’m the most underpaid CEO. I think I’m rich but he thinks that I’m the most underpaid person he’s ever audited it. The humanitarian aspect is the base. I’ve had a chance to help so many people in such profound ways.

But my particular gift I would say is that whether you want to call it the vision thing or whatever, is that I can see in my mind’s eye a project from A to Z. So it’s kind of like and so to be able to realize all these different things that we’ve done — that challenges me mentally in a way that I find very exciting and gratifying.

The other thing though too is that I mean I think the immediate reason that I got involved in this was I was so angry. I was so afraid. I was so grief-stricken. A lot of people abused drugs or alcohol; a lot of people just became severely depressed. I mean the easiest thing for me to do is just to channel that.

But the other piece of it is that part of how I’ve survived all this time is first of all, the job that I have in the work that I do has changed a lot. So it’s not boring in any way, shape or form. But the other thing is that I have a great support system. I’m close to my biological family, I have lifelong friends, I have a partner, now husband, for 24 years.

But also I mean the people who work at AHF — I mean the board of directors, the senior management. I mean there are people who’ve been here 30+ years and that’s great support. Sometimes when you’re out in the world taking blows and there’s a place you can go back to where you’re going to get supported — I mean that makes it much much easier. But I can’t really think about what a better job I could have.

And people ask me about retirement — I always say I have the Ruth Bader Ginsburg retirement plan. But I think that being focused on what my mission is rather than whether people like me or don’t like me or agree with me or don’t agree with me — I think has been very helpful.

I think you have a reason to be you have a reason to get up every day. It sounds like a reason to exist.

The other thing John is, I’m not even exaggerating, hundreds of the people who’ve been in opposition to AHF and to me have come and gone. The other thing too is that if people are honest, a lot of the things that they were fighting against, that we said we were in a vanguard, we said this is the direction things should go — most things have turned in that direction.

I remember once I was talking to my father or saying, ‘Dad I’m in hot water, I’ve taken this position about testing newborns.’ My father was very far left. I say, ‘Well people are saying that if you test a newborn that you’re indirectly testing the mother.’ He goes, ‘That’s crazy.’

So what’s going to happen when the baby dies — they’re going to bury in the backyard?

I think the consensus is that the dire things didn’t happen and it’s necessary for a variety of reasons I think.

The issue around PReP has been controversial. I was never against PReP. I just didn’t believe that it would bring HIV rates down for a variety of reasons. I also thought it would basically pulverize the condom culture, which it has. I said the STD rates would skyrocket; they have.

But one of the things that I would say that makes me sad is — you and I have always had mutual respect and we’ve always been able to dialogue. By and large in this community there’s not much space for that, which is sad.

In the few minutes that we’ve got left, let’s touch on COVID. I mean obviously you’re watching another pandemic in full swing. We learned nothing. So what criticism or what ideas do you wish that people who were running the show now for covid would have learned or gathered from those of us that walked through the last epidemic?

Let me start by saying that AHF has fared incredibly incredibly well during COVID. I made a sort of a pact with the staff here very, very early at the very, very beginning. I said ‘Look no one’s gonna be laid off.’ I said, ‘but we’re gonna remain open.’ And we gave a lot of additional benefits, we gave child care allowances, we gave augmented sick leave, we gave a bonus to the lowest paid employees, we just kept sort of layering that on, and people came through like champs.

By the same token our client satisfaction readings from the patients skyrocketed as well.

One issue with COVID that is a big issue is communications, which have been horrible. It’s like, ‘OK follow the science and listen to the scientists.’ Well it’s a Tower of Babel. Who are you supposed to listen to? And God forbid anybody just say ‘I don’t know’ or just limit themselves to things they did know. So that’s one piece of it.

The other thing that people forget when they talk about public health is they leave out the public in public health. So it’s all top down. We were very, very late in the game. We reached out to everybody and said this is what we have available to help. We can vaccinate. But even before that we can test, we have mobile vehicles. Nobody responded to that. We said ‘We have hotels, we’re doing housing. We said, ‘Some of those rooms are empty, we’ll give you those rooms.’ So nothing, zero in that regard.

We keep blaming people for having some of the hesitancy or whatever that they have but the reality is that if we had mobilized at the community level very, very early — churches, fraternal organizations, sororities and fraternities, you name it — they would have had a better chance. So that’s one thing.

Another thing though is about COVID is that we’re hoping for global solutions to big problems like climate change and other things. I mean COVID is a sorry example. I mean the lack of resources for PPE, the hoarding of vaccine, the lack of coordination.

But even like one of the projects we’re doing right now is we have 14 projects around the world doing genomic sequencing because —  and it’s not expensive — but you need an early warning system. I mean there’s likely to be another variant that will take over; hopefully it’s not as bad as the Delta was, but these countries either have no genomic sequencing or virtually none or else it’ll take two months to get the results. I mean AIDS, a lot of it was a bottom-up. It was community-led. That’s part of why it was so effective. And also we had to fight to get the drugs available all over the world. So you could have learned from that, and that was probably the biggest lessons I think.

What should it say on your epitaph? What should it say on the when Michael Weinstein’s gone?

Diane Watson wrote it for me. She said that I comforted the afflicted and afflicted the comfortable.