David Klotz

Q: As far as this interview, it’s – I have a couple things I really want to talk about but it’s mainly been really free-form when I’ve talked to people. Just kind of you first got involved with the group, how you got involved with – particularly with what you do professionally, I’d love to talk to you about that, um, um, I don’t know, how you got involved. Again, it’s really free-form if we could start with just, like how you first got involved with the organization. And I know it might be a while back, so no worries.

Klotz: It was quite a while ago. Well, I was a grad student at Columbia from ’87 to ’89 in the School of International and Public Affairs and I was in the MPA program. At the time, I was doing some volunteer work for GMHC. I was involved in ACT UP a bit and um, my – well the thing about the MPA program is that it has a core curriculum but then you can take classes in almost any discipline. I – I always wanted to do something civic-minded and you know, something gay-related and at the time the urgent issue was HIV. So I took courses in the public health school. I must’ve seen some materials that GHAP had put out and um, so I contacted them and I actually, I – my entre was I did a project for my statistics class on students’ knowledge of and attitudes about HIV and safer sex. And I went to a GHAP meeting to interview them and to get their opinion on the survey instrument and um, I ended up joining the group. [laughs] At the time, they were kind of selective about who could participate, um, they wanted generally more, more, it was more grad students at the time. I don’t really remember any undergrads that were involved. So they, they kind of recruited me and I was happy to join. So this was in ’88 I think. And um, yeah I just kind of jumped in, and we would meet in Laura’s office and um, we did condom distribution and set up tables during different student activity fairs. We also, um, probably the bigges thting we did was, we did talks in the dorms during freshman orientation and teams of it was two of us, each, would go in and give a, sort of an AIDS 101. Talk about the scientific and uh, um, sort of give an overview of what was known at the time of the, about the kind of life cycle of the virus, and testing, and the treatment options that were available at the time, which wasn’t much, and um, give an overview of safer sex and condoms, and give a condom demonstration. And um, just – we’d show a film, we used to show a little film, it was a documentary that some student had done at I think UC San Diego, who was, it was like a student project or something. It was about HIV on campus and they interviewed students partying and delightfully unaware of HIV and they interviewed a student who had been infected, and um, just had sort of a discussion with him about, um, sexuality and uh, safer sex, and um, probably also talked about stigma and other issues, I don’t remember completely. Um, and then, we started doing pre-test counseling, um, you know the test hadn’t been available very long, and it was the antibody test, and um, Laura I guess worked with the, um, student health service to, um, I guess, funnel the people into a sort of a – Well, we would do kind of peer pre-test counseling and she would meet with them one-on-one and do more of the I guess, professional counseling and also the post-test counseling. And that started while I was there, and that was – and we all went through training on you know, how to talk to people about the test and why it was important to know your status. Um, let’s see, that’s pretty much it, did you have a question?

Q: Um, so, sorry, just a first thing, you mentioned when you got involved you were doing a statistical thing on how much people knew. What did you find from that? And I guess that combined with the FLRPs thing, rather than some specific paper you wrote 25 years ago.

Klotz: Yeah, um, well, generally, I mean this was in the late 80s. HIV education was not very prevalent in high schools yet. It was starting in some parts of the country, so – most students were coming in with relatively low knowledge, just what they knew from the media, and um, you know, people knew the basics that you know, condom use prevents the transmission of HIV, that um, uh, you know people’s – um, I think most students still thought of it as a gay disease, weren’t necessarily particularly concerned. Very little knowledge about you know, pathogenesis, or you know, the scientific details of how HIV compromises the immune system or the natural history of HIV disease, very, very little knowledge. We tried to cover some of it.

Q: And, like how did people react to it? You didn’t mention that the first time.

Klotz: Well, in the dorm raps we did, which were I think, I think they were supposed to be mandatory you know you always had some people who seemed, um, you know, completely frightened out of their wits by this. And some who were disinterested and didn’t think it applied to them. Some who rather, who would’ve been out, you know, drinking beer. [laughs] Um, uh, but people were generally curious and you know, receptive, and I remember there were a lot of questions about sort of the more scientific aspects of things. And also, lots of questions we really couldn’t answer about, about the relative safety of various sexual activities. Which you know, like oral sex and um, which even today you know you can’t say for certain exactly how safe some of these things are. [laughs]

Q: [laughs] It’s funny that you mention that, I interviewed someone last week who said, “And people thought you could HIV from oral sex back then!” And I just talked to Laura we really underemphasize how much you can get HIV from oral sex, so it’s true, people really aren’t sure on these things. [laughs]

Klotz: Yeah.

Q: You touched on it, but when you were doing pre-test counseling, what were those sessions like?

Klotz: Um, I think most of the students at the time who came in were gay. And um, I think most other students didn’t feel a kind of sense of, that they had been at risk, so it was very rare to get heterosexuals, especially male heterosexuals. You’d get some more – I remember it was mostly gay men, and um, it was kind of nerve-wracking, because almost, you know, invariably, we would ask them about their sexual history and invariably they’d had had unsafe sex. And um, couldn’t reassure them that there was very little risk of you know, there’s a good chance your test will be negative. You know, you can’t necessarily say that, you have to say, well we know there’s – you’ve had unprotected sex and you should be tested, and we’d counsel them about you know, maintaining safer sex behaviors, you know, going forward. But really all we could do is be reassuring and, and say why they should be tested and why they should know their status, which at the time there was no real effective treatment. The only, um, drug that had been approved was AZT, which really didn’t work.

Q: AZT equals poison time.

Klotz: Yeah, it was that too. I mean, the biggest rationale we gave was that knowing your status you would be much less likely to, um, engage in behaviors that might transmit the virus to somebody else and also, um, you know, there was um, PCP prophylaxis so people who had, um, who were positive, who had a t-cell count below a certain level would take antibiotics prophylactically to prevent pneumocystis pneumonia, which you know, was at the time the number one killer of people with HIV.

Q: And yeah, so when you saw these people, who were like – I’ve just heard such varying things, were they anxious? Like, how did they –

Klotz: Yeah, people were pretty nervous. They, you know, I mean especially, these were kids who came from other parts of the country, and come to school in New York City which was the epicenter of the epidemic, and you know, they engaged in unprotected sex. A lot of them were, a lot of them were nervous. We weren’t involved in the post-test counseling so we weren’t giving the results. Laura did that, she would know, have I guess more a sense what the actual prevalence of positive tests were at the time.

Q: Yeah, did you do anything with the support groups of the positive community?

Klotz: Um, no, that didn’t exist when I was there. Um, we did mostly counseling and prevention, safer sex education. The, I mean, GHAP was only a year or two old when I was involved. And um, yeah, the test wasn’t as prevalent, so as far, yeah, I think any kind of support or counseling for students, students who tested positive came after me. I don’t remember being involved in that.

Q: And then, it’s just different, the way, we give all the results now, and we do the pre-test counseling and give all the negative results, because we do, I’d say, about 1,500 tests a year, and normally 3 to 5 are positive a year. And Laura still gives all the positive results but we do all the negative ones. And we also are completely integrated with the Health Service. We operate out of the medical center, like medical services, and have rooms and offices and such. From the way it’s been described to me, it’s very different.

Klotz: Yeah, no, no, I mean, Laura had an office in the, I guess it was the mental health, you know, it wasn’t a clinic, even, just offices. And uh, you know, we just operated out of there, it wasn’t connected with the health service, the University Health Services at all. Um, I think anyone who tested positive then Laura would connect them with the right person at the health services but we were kind of operating on our own. Um, yeah. I don’t remember even ever speaking to a medical doctor or even a nurse practitioner.

Q: But then what was the training like?

Klotz: Um, god. I can’t remember. I don’t remember actually. I think it was just Laura. Um, you know, talking with us about how to, um, you know, how to counsel somebody, what to bring up, what materials to give them, um, how to be reassuring, you know, um, what, yeah. I really don’t remember the training. It wasn’t quite as professional as- [laughs]

Q: I guess transitioning to after GHAP, how did, so now you are the head of the, your position is the head of this HIV community outreach?

Klotz: No, no, no. I’ll start from after GHAP. I was involved in GHAP until I graduated, until I got my masters’ in ’89. And um, then I went to work for GMHC in their prevention department. And I ran prevention programs for gay men, safer sex workshops and outreach in public sex venues and um, workshops, testing, and um, a variety of um, prevention activities. And um, I have to say, having GHAP on my resume was extremely helpful because I didn’t really have any work experience in the field before. I had volunteer experience and I had activist experience, so that was – and Laura was one of the references, so. And uh, the people who ran the prevention department of GMHC knew her, so that carried a lot of weight. And I worked at GMHC for seven years, and then I went to work for the mayor’s office in AIDS policy coordination, which is an office that does not exist anymore. It was created in the early 90s when New York first got a grant under the Ryan White Care Act which is federal funds to pay for treatment and care for uninsured people with HIV and to pay for services that were, that are not reimbursable by any other funding stream like Medicaid or private insurance. What’s unique about the Ryan White Care Act is that every city in the country that gets a grant under this program has to set up what’s called a planning council that determines the service priorities for the use of the grant, and I staffed that planning council. The mayor’s office of AIDS policy also coordinated another federal grant called HOPWA which stands for Housing Opportunities for [Persons] with AIDS, to provide permanent housing and supportive housing and case management in supportive housing and rental assistance to people with AIDS who are either homeless or at risk of being homeless. And we were also meant to coordinate services across city agencies because there were AIDS services in the departments of Health, Corrections, Homeless Services, youth and community development, legal resources administration, a whole bunch of city agencies. But it never really functioned as that. It’s main job was the HOPWA grant and staffing the Ryan White planning council. In 2003, Mayor Bloomberg moved the entire unit out of the mayoralty out of the unit and into the Health Department. So um, I’ve been with the unit and I’ve moved up with the unit. I’ve been with the unit since I left GMHC in 96, 97 and since then though, the grant, the Ryan White grant has grown from about what was it, 40 or 50 million dollars a year to about 120 million dollars a year. So, so I staffed this council, make sure it fulfills all the requirements of the law, the Ryan White law, a lot of it is administrative, making sure that, um, they complete the tasks outlined for the council in the legislation. And then providing the counseling with the day to day need to do their planning. The way the law is set up the council, which is appointed by the mayor, and includes some government officials, some providers, some people from the community as well as some what we call “consumers” – people living with HIV who use what’s that called, Ryan White parties, so it was – they come up with the list of service categories and decide how those service categories are implemented and then they decide what percentage of the grant will go towards funding that particular service category. So they’ll come up with a menu, like “Medical Case Management” “Supportive Housing” “Legal Services” “Food/Nutrition Program” “Substance Abuse Programs” “Mental Health Programs” etc. and then describe what the menu of services should be within each category and then how much money goes to each category. Then another unit here in the Health Department acts as the grantee. They take that set of priorities and they implement it by getting the money out to the providers, the clinics and the hospitals, to the social service providers and um, also some city agencies through requests for proposals and other you know targeted allocations, so there’s a separation between the planning and the grant administration. And the planning council does not get involved in the grant administration at all, but what I do is I keep the council going, so the administrative things that it requires and also the uh, provide them with epidemiological data and commission studies from um, Columbia University School of Public Health had a contract with us to do a, they do a launch tool, cohort study of about 750 representative people living with HIV on their health status and service needs and we use that to plan for services and um, so I guide this council through an annual planning process that goes into our grant application to the federal government that determines based on the need, what services to fund and how much money we should give to each of those services. And then we also assess how well the grantee side is doing in implementing priorities, getting the funds out, and hopefully improving the health outcomes of the clients that are receiving services.

Q: And that’s for the entire city?

Klotz: That is for all of New York City, yes. All five boroughs.

Q: So like, among the like, people who are, like, you mentioned the longitudinal cohort, do you mind just explaining, forgive my ignorance, what that means?

Klotz: Ok, well um, we pay the, some researchers at the Mailman School of Public Health who went out and found about 750 people living with HIV that represent kind of a cross-section of people with HIV demographically in race, ethnicity, socio-economic status, and um, uh, gender, and you know, distribution by geography, and they’ve been following them year after year. Every year, they do an extensive interview with them and that’s what a longitudinal cohort study is, is that you do, a cohort is a group and then you follow them over time. And um, it’s the same set of questions about, um, everything from their, um, sexual risk behavior to what meds they’re taking, how adherent they are to their meds, if they’ve been hospitalized, what symptoms they’ve had, what, um, any changes in their income or housing status, their needs for you know food supplements or income support. And their personal and family histories, if they have social supports, there’s a whole huge range of questions and um, it’s been going on for, um, well the study’s been going on for about fifteen years, and they keep replenishing it because people drop out, some people die, um, but they keep the number at about 750 and follow them as long as they can and it provides us with a wealth of data for planning.

Q: Yeah, it seems like especially if it was started in, what, that would be ’97, after anti-retrovirals and the cocktail, that would be very different findings.

Klotz: Yeah.

Q: So that – oh, I’m sorry.

Klotz: Yeah, I think it started even before, I think the first cohort started in ’95 so there’s been a, dramatic changes in um, especially in people’s health status.

Q: Yeah, this might be an impossibly broad question but I guess what findings have come out of that, anything particularly interesting or salient?

Klotz: Yeah, well um, all of the reports that analyze the data from these interviews, if they see interesting patterns, they extract them and they issue reports and they’re all on the website of the planning council, which I think is how you contacted me, through NYHIV.org.

Q: I think so.

Klotz: You’ll see a homepage with a pull-down menu that says research and you’ll see “CHAIN” which is the acronym of the study, it’s Community Health Advisory Information Network, that’s the Columbia study. It’s the cohort study. But yeah, they’ve found enormous amounts of interesting information and they’ve issued hundreds of reports. I mean, just this year, we asked them to focus on whether or not the people in the cohort were adequately using the services that they said they needed so they found for example that 75% of the cohort said that they needed food nutrition programs either a congregate meal or a home-delivered meal or something like that, food bank or food pantry. But only 50% were, of that number of people, were actually accessing the service so, um, and you know that helps us to target resources because you know, the grant is 120 million dollars a year and that sounds like a lot but that’s actually, um, it’s a drop in the bucket. The city spends about two and a half billion dollars on healthcare for people with HIV, almost all paid by Medicaid. So you know, Ryan White money is a relatively small amount of the overall pot of funds that goes to you know, health and social services for people with HIV but it’s important because it fills a very important gap and pays for things that are not reimbursable by Medicaid or insurance or other funding streams and fills a, niches, where people would otherwise fall through the cracks.

Q: And do you do anything with ADAP? ADAP is federal, that’s just another funding stream then?

Klotz: ADAP is funded under Part B of the Ryan White Act, and Part B is money that goes to the states, so each state administers the ADAP grant and is supposed to contribute matching funds and New York is actually very generous and um, more than matches the federal grant. In addition, our planning council has decided and they’ve been doing this since pretty much the first year of the grant to allocate a portion of New York City’s Part A grant to do the ADAP program. We give about 20% of the program dollars to the state, to supplement the ADAP program, and that allows the state to have an even more ADAP program. Because each state sets its own eligibility requirements and sets its own formulary which is what drugs are covered and New York has by far the most generous ADAP program in the country. Currently you can earn up to, for an individual, earn up to 44,000 dollars a year, which is, you know, more than double the federal poverty level. And the formulary covers every retroviral, every drug to treat an opportunistic infection, every drug to prevent an opportunistic infection, drugs to treat side effects. It includes, it covers nutrition supplements, I mean, it covers almost everything. There are states, especially in the South, that have very stingy ADAP programs. They really don’t supplement their federal grant and some states, there are some states that even have waiting lists for a very basic formulary that only includes one or two retrovirals. Any drug that the FDA approves for treating HIV is added to the New York formulary, even the most expensive classes like fusion inhibitors and integrase inhibitors. There are states that only pay for one non-nuke and two nukes and that’s all. So.

Q: That’s good to hear about New York at least.

Klotz: Yeah, and that’s a lot to do with the supplement that the New York City planning council gives to the state program.

Q: Makes sense. So I guess, what, you kind of touched on this early on, but what draw you to make HIV/AIDS what it seems like your life’s work been?

Klotz: Well, I mean you know I came out very young. I was 15 and this was, that was in 1979 so it wasn’t that common for teenagers to be out at the time, it’s much more common now, and I’ve always been sort of a political activist and very civic-minded and you know, when I went through college, I knew wanted to work in public service, and I originally thought maybe I’d go to law school to work on legal issues. Gay rights laws and um, you know, maybe work in the political process, I wasn’t sure. I’m from New York originally, went to school in Boston and when I came back to go to grad school, it was late 80s, and that’s really when – I was a little insulated from, you know, HIV during the early days of the epidemic, being on a college campus you know, up in Boston. But when I moved to New York it came, it became clear that by far the most important issue facing the gay community was the AIDS epidemic. I mean, nothing came close. Now it’s kind of receded into the background, and it seems like marriage equality is much more in the forefront of people’s minds. Back then nobody even considered marriage equality even a remote possibility. So that was never on the, people you know, were lucky if we got basic anti-discrimination laws, but um, so yeah, I just, I started volunteering at GMHC and participating in the AIDS walk in the early days when they first started doing that, and then going to ACT UP meeting, going to protests and, uh, and so when I was in grad school, um, in this public administration program, it just seemed the logical step would be to focus on public health, so I took courses on epidemiology and sociomedical sciences and um, parlayed that along with my involvement in GHAP and previous experience into my job at GMHC and then with the city. So.

Q: Um, I think that covered almost everything I wanted to, but was there anything else you wanted to talk about?

Klotz: Um, let’s see. Well I mean, you’re, this is mostly about GHAP, so um, you know, my memories of GHAP in the early days is that we had a very coherent group that was almost all gay men, that was almost all graduate students. It wasn’t that big, only maybe a dozen people involved in ’88 and ’89. A lot of us have stayed in touch, have stayed friends over the years. A lot of us have gone on to work on HIV professionally. Um, and uh, um, I mean there was a real sense of camaraderie and um, we all loved Laura and she was incredibly supportive and um, I actually ended up hiring Laura as a consultant on a couple of projects when I worked at GMHC. Um, along with Paul Douglas, I don’t know if you know who he is, or was, one of the founders who died. Yeah, it felt like we were you know, making a contribution and educating our peers and um, it was, you know, there was a real activist sensibility. Yeah. [laughs]

Q: No, that’s, that’s great.