AIDS in New York: Then & Now-Part 1: Interview with Janet Weinberg- Chief Operating Officer of GMHC

I’m doing a three part series on AIDS in New York, a look at what has changed and what hasn’t and why.  This interview I did with Janet Weinberg on August 8, 2013 changed the direction of the piece so much so that I’ve decided to publish the interview as part one.  Part two is my in-depth article about AIDS in New York: Then & Now, and part three is an inside look at our government's role in the epidemic.  Janet is like Larry Kramer’s character Dr. Emma Brookner from the critically acclaimed play The Normal Heart.  She was unabashedly direct and at times passionately angry.  Her message is clear and needs to be heard.

JMA: The CDC is reporting that new infections are down in demographics like black & Hispanic heterosexual men & women but a troubling increase among young white gay and bi-sexual men (22% increase).  Does this match what GMHC is seeing here in NYC and if so why the skyrocketing jump in this demographic?

JW: No. How’s that for an answer? We’re seeing a major rise over here among young, black men 16-29. Most of them having been thrown out of their homes for coming out as gay or HIV positive.  Then I have a group of 30-40 year old men who grew up in the crystal meth era. 25% of those who started using crystal meth seroconverted to HIV. 1 in 4. 

JMA: On the crystal meth note have you seen an increase in HIV infections among crystal meth users who are now injecting the drug with a needle as opposed to smoking it since that method is on the rise?

JW: No, not particularly.  In fact if anything compared to 2008, 2009 & 2010 around here we’re actually seeing less meth. And we’re seeing more people in recovery around meth than we did. Remember New York City really got hit with meth from 2001, I’d say to about 2009 or 2010 and we are now entering the recovery stage of it. 

JMA:  That’s really great to hear.

JW: Well let’s hope so. (Knocks on her wooded desk).  Think about this as you’re writing this article James. An obit (Obituary) passed by my desk last night from a man who is the President & CEO of AIDS United, which is a nonprofit AIDS organization. Now what is this President & CEO writing? I want you to hear the first line. (She began reading) “With broken heart over the loss of my life mate I share the news that Shawn passed away earlier this evening August 7, 2013, having lived twenty-five years with HIV at the age of 44.”  I could go on, but I think that tells you a story doesn’t it?

JMA: It tells a powerful story. I’ve been in New York since 1995 and I have only known one person that died of AIDS.

JW: You’re lucky.

JMA: I am, but I've been interviewing gay men in their 20’s & 30’s, very few, if any of them have ever known anyone who has died of AIDS.  So my question is have the meds, in a large part, turned this disease, in the minds of most young gay men, into something more like herpes rather than a deadly killer?

JW: I hope not but I believe that exists in certain demographics. 

JMA: Do you see fear in young men, the fear of death in those who are diagnosed with HIV like it was twenty five, thirty years ago?

JW: Yes unfortunately we do here at GMHC. Because the folks we’re servicing here are poverty stricken.  And by the time they get to a doctor so many of our clients have full-blown AIDS. They’re not HIV positive, they have AIDS.  And they are terrified of dying. They have major medical issues that got them to the doctor in the first place, and I’m not talking about a little cut on the finger. I’m talking about cystic pneumonia. We’re talking about meningitis, very very serious infections. And so, yes these folks are terrified of dying.  They range in ages from adolescence to well into adulthood.

But what I do see, and I’m not trying to be glib, but gay white men of privilege who are thirty years old who believe that AIDS is like herpes.  Because they’ve had the privilege of access to medical care consistently throughout their life, because they had the knowledge to go get tested, because they knew how to get tested anonymously, because their neighborhood had a place for them to have access to all of that. But the folks we’re servicing, they’ve never had access to that. 

JMA: That’s very powerful for me to hear as a gwm, also because of what the CDC is reporting of a major rise among gwm infections. You have said that most of your clientele are young black men who have been rejected and thrown out by their families. Why is there so much rejection in the African-American community? Is it largely because of embedded Christian beliefs?

JW: I mean right wing religion has not done a whole lot of good around this, but that’s true for any of the evangelistic religious folk.  Because frankly if there is a young man sitting in the audience in his church like that then I can almost assure you that he’s not coming out as gay and that he’s having sex in the same closet that msm (men seeking men) is having it in and therefore being exposed. And if he does come out then he’ll be removed from his church, his family and his community. 

JMA:  What are the similarities between thirty years ago and today?

JW: I see the same need for increase exposure to medical care, the need for education.  We keep having the same damn conversation about stigma, about homophobia, about racism. I mean none of that seems to have moved a whole lot. The needle is still sitting in about the same spot. 

JMA: What has changed?

JW: What has changed is the immediacy and the urgency of death. People know they can potentially live beyond eight weeks, ten weeks and when we were seeing AIDS in 1981 they were just dying so fast. You know James, you talked about the healthy young men of 1978 who weren’t pumped up on steroids, who didn’t have these chiseled bodies, but we know people were dying of AIDS by 1978 & 1979, it was just totally undocumented. And so I look at those beautiful young faces and say how many of them actually died a young death and we didn’t document them because we didn’t know.

JMA: That’s incredibly sad.  What can our community do to assist the young men coming into GMHC that you just told me about that are homeless with a lack of medical support, what can we as a community do to help them?

JW: Well the answer to that is really easy. But before I answer that I want you to hear what’s happened.  So, the government should be taking care of people who are sick and need assistance right? Would you agree with that? 

JMA: Yes

JW That we, as taxpaying citizens expect our government to take care of people who need to be taken care of? Well instead, these same folks, and these same organizations that are doing the work of the government at GMHC just got killed with sequestration. We got killed with even worse than sequestration James, just this week, this very week, we had to lay people off because there was a little mathematical error made by HRSA (Human Resources Services Administration) who administer all Ryan White funding. And in New York State they made an error on something called the Hold Harmless Clause, for 2010, 2011 & 2012. And ironically that Hold Harmless Clause cost New York State a whole lot of harm of $18,000,000 in the last two weeks.  There are cuts being done….who gets Ryan White funding? I’m sorry to sound so angry but I am just furious.  Ryan White is the payer of last resort. Who is on Payer of Last Resort? It’s the people who can’t get Medicaid, it’s the people who can’t get Medicare, it’s the people who don’t have access to physicians, it’s the people who don’t have insurance, that’s who we are taking this $18 million from. It’s outrageous! 

JMA: I’m afraid to even ask this question, but what about HASA(HIV/AIDS Services Administration)?

JW: (Laugh)

JMA: (Laugh) See? 

JW: So, HASA. You should talk to our clients about HASA. Because what our clients will tell you about HASA is because there’s no 30% rent cap, meaning they can have whatever cap they want and folks will just have to make due on whatever is left of their Medicaid or Medicare. We have people that are literally living hand to mouth, if they’re lucky! We have a client who buys baking soda to brush his teeth because he can’t afford toothpaste. And he’s shaving with the same razor for a month and a half because he can’t afford new ones.  When we give this guy basic hygiene products like shaving cream, toothpaste, soap you would have thought that I just gave him a gold ring.  By the way I should tell you this is a white gay man in his 50’s.  So don’t think this poverty piece is just among the black community with HIV.  If you look at statistics 67% of people with catastrophic illness go bankrupt. 

JMA: Well I understand, as a gay man, the deep need for approval and validation to overcompensate for the shame of being gay and when you throw HIV, homelessness and government assistance into that already complicated mix you get more, devastating shame and fear of the stigma that society has created. We have this “good little boy syndrome” that I have also suffered from.  It’s a vicious cycle perpetuated in and out of the gay community.  So my next question to you is what can we say or do as a community to change this vicious cycle? 

 JW: 1. Make noise. Go talk to your elected officials, city, state and federal to say that it’s outrageous that HIV funding is being cut. 

2. Another talking point is to say that it is absolutely unacceptable that there are no more prevention dollars to prevent people from getting HIV. The only way you get service these days is to Seroconvert. That is the government doing that. Yet at the same time Hillary Clinton, Barack Obama, they stand up and say “Next generation, no more AIDS.” God bless it, but how is that supposed to happen when we can’t prevent our youth from getting HIV? We don’t have money. We don’t have the support.  We don’t have the materials and the government is not supporting us! So people need to be angry about it. I can’t be the only one getting angry.  We’ve trained our clients to be angry and to talk about it.  But it has to be a voice of a million, not a voice of a few thousand.  So without spending a nickel, that’s a big thing that can be done.  But the pressure needs to be consistent. And it needs to be consistent 365 days a year so that when it’s budget time those folks cannot ignore the phone calls, the letters, and the continuous pressure on them. 

3. The other piece is that we’ve stopped writing checks. We have abandoned HIV monetarily. The government has abandoned it and frankly, the very people who have survived it and have had the pleasure and luxury to survive it have abandoned it. (yelling) And it’s just not right.  But I’m not an angry woman. (Laugh)

JMA: Well your anger is fueled by passion, that’s very clear. Why do you think the survivors of thirty years ago have abandoned the cause? 

JW: They got meds. They’ve got meds and access to health care. Their friends aren’t dying before their very eyes so it’s easier to turn your back again.  Look, it’s not pretty. HIV and AIDS are not pretty. It’s not attractive. Who wants to think about it every day except those of us who’ve decided, I guess, we have to? 

JMA:  And that’s one of my main points with this article is that it doesn’t have to be seen every day and it’s getting swept under the rug in a very dysfunctional way in our community. Out of sight, out of mind, it’s still about how we look.  Unless they have it literally written on their face with the sunken in cheeks from lipodystrophy, which some of my friends do, then you don’t know.  There are many guys running around on HASA who are HIV positive and crystal meth junkies but you’d never know it. 

JW: You wouldn’t know it and they’re afraid to disclose and we’re back to the real epidemic which is stigma and homophobia.

JMA: And their living more secrets because of shame is that correct?

JW: Yes. And we’re seeing that component across the board from whites to blacks to Hispanics. That’s the common denominator.  It may look different in different communities but it is all the same disease.  It’s called stigma.

JMA: Two last questions for you Janet.  1. How long have you been at GMHC?

JW: I’ve been at GMHC since 2005 so eight years.  But in 1983 I was an occupational therapist exposing myself into the health services administration of New York City, in other words there were hospitals with HIV patients in them where no one would touch them and I felt that it was my duty as a lesbian to be part of that. So I’ve been a part of the HIV community since 1983. 

JMA: Well that leads me to my final question. What keeps you going today?

JW: What keeps me going? My fury.  My absolute love for the clients of GMHC.  They are the most resilient, magnificent people that I have ever met in my life. I sat in a room of about one hundred people yesterday telling them about the Ryan White cuts. That their food was being cut. That the very staff that had been taking care of them are being let go. And it would be more difficult to give new services to people.  I’d be furious if I was them, but do you know what those clients said to me? They said Janet how can we help you? What can we do to help you? That’s what keeps me going. The resilience, the love, the kindness, the caring, the survival of these people is amazing to me, and that’s what keeps me going thirty years later. 

JMA: Well Janet you are an inspiration and have given me a lot to think about today as well as a lot of hope.  Thank you.

JW: Thank you James. Make some noise.