Community Health Project Moves Up
Dean LaBate Discusses Opportunities and Challenges
In 1983 the Community Health Project (CHP) was founded when two community-based STD clinics joined. Today it remains New York's only lesbian and gay health center. For over twenty years it has provided low-cost, high-quality health care -- regardless of a person's ability to pay -- from a cramped 2,500-square-foot space in the Lesbian and Gay Community Services Center. Early next year CHP's 36 paid staff and over 150 volunteers will be able to move into a newly renovated, state-of-the-art primary care center with over 10 times the space. The move will allow them to expand services and triple the number of annual patient visits. Dean Labate, Executive Director of CHP talks about the opportunities and challenges.
Body Positive: Ten years ago Body Positive was founded in a very small corner of the Community Health Project (CHP) office. Since then we have had to continually re-evaulate and at times shift our programs in order to serve the HIV-positive and HIV-affected community. Could you talk some about how CHP continues to serve HIV-positive people and the impact of HIV on your programs?
Dean LaBate: First off, I want to say that it's really -- it's a tender moment, I would think, for both Body Positive and CHP. As Body Positive is having its ten-year anniversary -- and as you said, we can be thought of as either the parent or the catalyst for Body Positive -- it's very heart-warming to know our agencies still complement each other so well. And I think that's what the whole AIDS service continuum in New York City is really all about, how agencies can collaborate and complement one another.
In terms of our services, we're not just an HIV and AIDS service organization. Community Health Project is actually much, much more than that. We're a very comprehensive health center, and certainly HIV and AIDS is a major component and is a major health issue that we address at CHP, but access to just good high-quality, health care is really what we're all about. I'd like to paraphrase from the 1992 presidential election when they said, "It's all about the economy, stupid." In health care, it's all about access, stupid. It's all about access. People need to have access to high-quality sensitive care. They don't want to come into a place where they are going to get a raised eyebrow by the registrar because they happen to be a gay, lesbian or transgender person. That will turn them off, that turnoff will hold them back, will become a barrier to health care. So homophobia, or transgenderphobia, AIDS-phobia, becomes a barrier to health care, and at CHP we try to bring down those barriers by creating an environment that people will feel comfortable coming to, where the people who are serving you may be very much like you, may be an openly gay person or a transgender person, or bisexual, or a straight person who is very sensitive to the needs of gay, lesbian, bi, and transgender people. And I think the key here is building an environment where people feel comfortable talking about their health care, their lives, their sexual lives, their physical and emotional lives, their nurturing lives at home with a partner, and there are not too many environments (health facilities) where that exists. We think that creating a Community Health Project is step one in a longer process. Step two is the ideal world, where any person, gay or lesbian person, can walk into any health institution anywhere and get that kind of care. That's a long way off.
I obviously come from a medical background, or medical administrative background -- and so I see the medical component being the linchpin for other services that people with AIDS need, not to just live, but to thrive. And so, having a core group, or a core set, of very sensitive, high-quality, non-judgmental medical services is crucial in that whole continuum of care. But, you really can't offer one service to somebody without offering them the other kinds of services that will really enhance their lives.
People with AIDS need many additional services, and these are not "frill" services; these are not just extra things; these are as essential as the medical care: the support services, the educational services, educational forums, information about insurance, all add to quality of life -- that is why it is so important that we link with other organizations, like Body Positive, GMHC, and People With AIDS Coalition New York, and Housing Works, and all of our other sister-brother organizations. These are the kinds of collaborative efforts that will literally help people with AIDS thrive.
In terms of adapting to all the new treatments that we're in the midst of right now, CHP has always been in the forefront of medical care for people with HIV and AIDS. We go back to 1985. CHP was one of the first community-based HIV primary care clinics in the nation at the time. We are constantly re-evaluating and reassessing the medical services that we provide, the kinds of treatment options that are available to our patients, and the kinds of laboratory tests they need. As treatment has advanced, it's become crucial to have the right diagnostics in place. Only at a place like CHP can you have comprehensive care offered to you in a very affordable manner. No one is turned away at CHP for inability to pay, and I don't know how many health institutions can say that these days.
BP: Are there real barriers to treatment, in terms of being able to afford the drugs that are out there?
DL: Yes, there are barriers, and one of those barriers is a lack of information about how to get access to care. Certainly New York has a wealth of benefits and entitlements that do not exist in other states. All you have to do is compare what New York does in terms of ADAP, ADAPT+, and AHIP, in terms of health insurance, for people with AIDS, in addition to Medicaid, and all the other kinds of entitlements that are available.
The main problem is getting people to understand how to access these benefits. Once benefits are accessed, there is less difficulty in obtaining the treatments. We work with our patients to try to get them into the kinds of entitlements and benefits that are availableto people with AIDS. The trick is, it always has been learning how to access them. So one of the main functions of many of the caseworkers at CHP is to ensure that any of our patients who come to us know about the kinds of entitlements and benefits that will help them in the health care maze, and we try to make it easy for them. And as part of those case management services, we also try to make sure that they get linked up to the other services in the community that I was talking about before. It's a package deal.
We also try to link patients who are interested in clinical trials with trials going on in all the different organizations and health institutions like CRIA, through New York Hospital, through any of the medical institutions where clinical trials are available, and through NYU and Bellevue, which we already have relationships with. We want to give patients, our clients, as many options as possible, and I think that's what we should be about.
BP: This move will more than triple your ability to serve the community. Where are you in the process?
DL: Let's start with some history, CHP has had the dream, the desire, to move into a more dignified, New York State code-compliant space -- since we moved into the Center, where we have been located since 1985. What was supposed to be temporary quarters for CHP turned into 13 years of being at the Center. It's been a very difficult kind of challenge. We're currently in about 2,500 square feet of what I call non-code-compliant space within the Center. We have examining rooms that have walls that don't go up to the ceilings. We have examining rooms without sinks. For many years the New York State Department of Health has said, "This is a very important program. We will let you operate with (what the Department calls) a stipulation and order agreement, and you must find new quarters." They finally drew the line a couple of years ago and said, "If you're not out of here by a certain time, we will have to close you down. You've run out on your extensions." So, with my coming on board in 1993, and with new financing available to health organizations, the board re-focused on a new facility. CHP applied for financing through the Primary Care Development Corporation, PCDC. PCDC helps organizations like CHP build new infrastructure to create new primary care capacity for underserved communities or underserved populations. We were one of the first ones helped by them. With the help of PCDC we then secured a bond from the state of New York, and this was the first time that a New York State Dormitory Authority bond was used to finance the construction of an outpatient health center. Through this combination of financing, the PCDC and the Dormitory Authority of the State of New York, CHP secured a 7.5-million-dollar bond/loan that helped us purchase the new building on 18th Street, construct and renovate it, outfit it, equip it, and build in some working capital. Our construction project began in December, although for the year and a half before that, we were working with the architects and we were working with members of the community to develop and design the kind of facility that we wanted to have.
We're on a very tight time schedule; this new health center has to be built and pretty much finished by the beginning of October of this year. We're on a ten-month construction schedule. As of today, we're about 40 percent of the way through construction. We hope to be able to move into the facility toward the later part of 1997, and to be open for business by January 1998.
BP: The impact of HIV/AIDS on the gay and lesbian community has been devastating. How many of the people you serve are HIV-positive?
DL: We, unfortunately, operate with an abacus, paper and pencil here. But we're working to change that so that we can really begin collecting good, hard data at CHP. But we do know that approximately 35-40% of the individuals that we see in our medical program within CHP are HIV-positive, and that's a pretty significant number. We have AIDS-specific programs. We have an HIV primary care clinic. We have an HIV/AIDS early intervention and assessment program for those who have recently tested HIV-positive and don't have access to good care. Again, our mission is to provide accessible, quality health care and while each of our programs may not be HIV- or AIDS-specific, each of them deals with HIV and AIDS in a very particular way. Let me give you an example. Within our Health Outreach to Teens (HOTT) program, we're seeing that about 20% of the kids are HIV-positive, and they are getting good medical care from the CHP HOTT Med van and in the CHP HOTT clinic. The Lesbian Health Program, while not specifically an HIV and AIDS program, provides medical care, information and support about HIV/AIDS issues. We address HIV and AIDS at every single medical visit and encounter with every single patient, and that goes for all of the programs that we provide any service for. I can't imagine it not coming up. When someone comes in for STD counseling, testing, and treatment, HIV has to be brought up in that encounter between the medical provider and the patient, even if it's a matter of thinking about, "If you're here for this STD, think about the risk that you're putting yourself at for HIV and AIDS." If a woman comes in for a vaginal infection, then a discussion about HIV and AIDS has to come up in the context of that medical visit, as well. So, the whole notion that HIV prevention efforts are just kind of relegated to AIDS programs is wrong, especially in a health center where you are dealing primarily with the gay and lesbian community. We have to be ever-vigilant about keeping HIV and AIDS on the top of everyone's mind. If the patient doesn't want to think about it, we'll help them think about it.
BP: Your core mission is to provide health care to the gay and lesbian community. Is your HOTT program also designed for gay and lesbian youth or does it have a broader mission?
DL: The HOTT program is one of the most unique programs that CHP offers, and it's certainly one of the most unique programs anywhere around the country. The way we thought about doing this was linking our medical services with the non-medical services of other lesbian and gay youth-serving organizations, like the Hetrick-Martin Institute, like the YES program of the Center, like Safespace, to name a few. Our HOTT van parks in front of these agencies, and we have a collaborative agreement with them that our HOTT van and our HOTT staff will provide the medical services for the young people associated with those gay and lesbian youth-serving programs. And that has worked out very well because it formed a relationship between the programs. The young people know they have more than one resource to go to for help.
The HOTT program does focus on health care for lesbian, gay, bi, transgender, and questioning youth. And let me tell you, there are a lot of teens and young adults out there that are using these services, and there are a lot of these kids who fall into one of these categories -- whether gay or questioning youth. That's just fine with us. There's no kind of litmus test for a youth to be part of the HOTT program. There's a large population of homeless kids, of street kids, many of them living in abandoned buildings and homesteading, who really don't have access to any good health care. We're there to provide good health care for them, and we do. There are no questions asked.
Again, young people are at very high risk for HIV and AIDS because of the kinds of sexual practices and sexual behaviors that they engage in. The messages that our HOTT program developed are different than the HIV-prevention messages that adults may hear about, and they might be given to the kids in different ways. We might offer a peanut butter-and-jelly sandwich for an HIV prevention workshop, and let me tell you, a lot of kids take us up on them. And it might take three or four peanut butter-and-jelly sandwiches before we get that kid comfortable enough to come in and use the medical services, but they do. It's not something that happens overnight. Youth can be very leery of adults offering health care, or anything, so it's a matter of building up trust. And so we're not trying to push anything down their throats, we're not telling them that you have to come in and get HIV-tested. We might think it's a good idea for them in the long run, but we also have to know what their support system is before we engage them in HIV counseling and testing. Kids with no support . . . a young person with no support who gets an HIV-positive test result is not in the best situation for a young person. We want to make sure that these young people have support systems in place before they're faced with an HIV test result that they may not know how to deal with.
BP: For people who are HIV-positive advances in treatment have brought forward a whole new set of questions. The whole decision-making process -- for both treatment and non-treatment issues -- has now become more of a strategic planning process than "this is what works." What combination of drugs should I take? Should I return to work?
DL: You're absolutely right. There's been a whole new dynamic that has sort of taken root among people who are HIV-positive or people who have AIDS that I don't think any of us were truly prepared for. Certainly, the new class of protease inhibitor drugs has created all kinds of new opportunities for people who expected to die in a number of years -- or didn't expect to live, put it that way. And so, folks who cashed in on their life insurance policies, folks who maxed out on their credit cards, who mortgaged out their houses or apartments, who went on disability and figured that this would be the best way for them to live out the rest of their lives, are faced with a whole new challenge now in how to make the most of their new lives. Again, this is all very recent and cautious information, cautious updates. No one is really sure just yet how long protease inhibitors are going to continue to be successful, and only time will tell on some of these issues. But there is enough information right now to make people say, "I really have to think about the future." And I think only part of that is in terms of medical treatments. People are thinking about going back to work now, and coming off disability. I know it's a challenge for people just to think about doing it. And I think our job, our role should be to help people figure out what their options are. I think with a combination of good medical care, the right medical treatments, the support system in place, good information about what their options are, and probably some good financial advice, people can make these choices.
BP: You've been open about your own HIV-positive status; this must also be very personal for you.
DL: As someone who has been HIV-positive for -- I guess I can call it an anniversary -- almost 11 years now, I've had very good health through it all. I've seen all of my friends, just about all of my friends and loved ones die, and always have asked myself, what's kept me going? Why am I still here? My doctor would like to tell me it's because I have a real good doctor, but I think it has a lot to do with my own spirit, my own strong but compromised immune system. It may have something to do with the early drugs I was on. But this past year I've had two medical setbacks. I've been in the hospital twice since January, but I feel like I've been able to bounce back from both of those episodic illnesses, and I'm now ready to consider my own treatment options. My health has been so good that I have not had to consider protease inhibitors until now. But I'm there now, and I need to understand my viral load count and why it's important for me to make a treatment option plan for myself. It's kind of easy sometimes to sit back and run a medical facility and forget about yourself, and I've learned that I can't do that. I have to concentrate on my own health care much more now, especially since I've had these episodic illnesses. So I've tried to do that. I'm learning what it is to be an educated health care consumer. I'm ready to make my own personal choices, and I'm looking forward to also living a long, healthy life. I know what my options are. So I can put a personal spin on this, a real personal spin on this, and know what many of our clients and patients are going through as well.
BP: What has helped to keep you healthy and, for lack of a better word, satisfied at the end of the day?
DL: I couldn't tell you what's kept me healthy -- I've rattled off a few things before -- I did some early treatments way back, early AZT, and all those experimental things that were out way back when. I had a period when I was relatively healthy and I had a period when my T-cells dropped to 200 and went back to 500 or 600. I've led an aggressively active life socially, physically, sexually. I've been involved in a relationship for 7 years, a relationship before that for a number of years, but my partner passed away. I'm an on-the-go kind of person. I can't point to anything that I do that's really healthy, very honestly. I don't eat right. I work long hours, and maybe that's part of the formula, I don't know.
But, I'll tell you, coming here to the Community Health Project was one of the best things that ever happened to me in my life professionally, and also personally. Having the job of running New York's only lesbian and gay clinic and building New York's new lesbian and gay clinic, which will become the nation's largest lesbian and gay health center, was a dream come true for me. Here I am, a gay man, someone living with HIV and AIDS, someone who has believed in health care as a right and not a privilege from the day I stepped into my first health care job, 20 years ago. This was a dream-come-true for me. And I was just beyond exuberant when I learned that I got the job here. It's been a challenge, it's been difficult. But I can tell you, from a personal and professional point of view, it's one of the things that does keep me going. I think we've come through four years of a difficult challenge at CHP. We've grown substantially, both in terms of how many people we're taking care of, the size of our staff, the space within our small, cramped quarters on West 13th Street, and we're also in the middle of building a new state-of-the-art health center for the community that will be welcoming to all, and that will be 10 times larger, 10 times more comprehensive than anything we have to offer the community now. Our center will include things like dental care and nutrition, mental health services, social work, primary medical care, and specialty services on site -- full laboratory services and the first not-for-profit lesbian-identified mammography unit in the nation. So we're creating a whole bunch of firsts here, and I just feel fortunate that I'm the guy kind of leading the orchestra here, and pulling it all together. But I'm not doing it alone. There are some very wonderful, talented, dedicated people supporting this, making it happen: the Board of Directors of CHP, our staff, and our volunteers who play such an important role in delivering our services.
BP: Do volunteers deliver a significant portion of your services?
DL: The volunteers play a really crucial part in delivering the care that we currently provide, and they will continue to do that in the new facility. The volunteer docs, the volunteer mid-level medical providers, like nurse-practitioners and PAs -- we have more than 140 volunteer medical providers and support staff who make this project viable.
And it's the only way we can do it, if we have volunteers who are willing to commit three, four hours a week, coming in and providing care. And we have some of the most dedicated volunteers anywhere; some of them have been volunteering with us for ten years or more. And we have a new stock of volunteers coming in all the time. The only way this new health center will work, the only way we will provide the level of care that we need to provide, is by having all of these volunteers as part of the whole staffing plan.
BP: Beyond accessing the health care that you and other organizations offer, what do you think is the most crucial thing someone who is HIV-positive can do for themselves?
DL: Be an aggressive consumer and get the support you need. Some people -- and I can probably see myself in this comment -- think they can do it all themselves. And you may learn, as I have, that you can't. I need support from my partner, I need support from my family, I need support from my co-workers; in my position, I need support from my board of directors. I am very fortunate. I have support in every one of those areas. I'm very fortunate. Not everyone has that kind of support. BUT -- the support is out there.
There are support groups, who are looking to see what kind of treatment options are available. CHP runs support groups; Body Positive runs support groups. PWAC, and a whole host of organizations -- we all run them, with different kinds of angles, for each kind of need. But the thing is, you have to make that call; you have to be willing to become educated; you have to be open to what the options are, and you have to be willing to make decisions. And the support is there, it's a matter of taking that first step, and that second step, because each bit of progress for yourself as an individual is just taking another step.
I will also say "You Are Not Alone" (see Creed, page 10) is something that we recommend over and over again for HIV-positive patients to read. Michael Slocum was a dear friend of mine, personally, and of the Community Health Project. And Body Positive founder Michael Hirsch was a dear friend of many at CHP. We look to him as sort of our inspiration, like we do Michael. Michael was personally known to me, and I miss him dearly. He had the strength of one hundred like me -- he's one of my heroes actually.
BP: Could you comment on two related issues: the incidence of new HIV infection in the gay and lesbian community and HIV prevention education and programs. Do the programs work and if so which ones?
DL: Education does work. Let's start with that. I think a lot of what you hear in some of the media is trying to instill fear in the gay community. Fear only lasts a little while. Fear does not get hold of a community and allow it to change behaviors. Education, on the other hand, which takes a long time -- education is not something that happens overnight -- is the most effective way to change behavior. But it has to be reinforced, it has to be continuous, it has to be considered, again, as part of the whole continuum of approaches to dealing with HIV. I think that in the gay community we've had successes and failures. We have had successes in the sense that the gay community has been educated by many worthy community grassroots-oriented organizations. Those kinds of efforts, I think, have paid off to a certain extent. There is a great level of knowledge. But it doesn't mean that you can sort of sit back on those achievements and say, "We've won that battle." We really haven't. The education has to continue; it has to be geared toward different segments of the community. Every community has its understanding of the facts about AIDS because of cultural and historical differences of those communities. So the messages have to be tailored. Young gay people come with a whole different set of understandings and beliefs and actions than members of the adult community. The lesbian community needs to be addressed and educated about AIDS in ways that are appropriate for lesbians to understand the risks involved in unsafe sex behaviors. So how the message is delivered is important.
I am not ready to say we've won that battle. I'm not ready to say -- nor should anyone else be -- that the incidence of HIV and AIDS in the gay community has leveled off. One year's difference in the number of HIV and AIDS cases does not tell a whole story. It may be a blip on the screen, and I'm not trying to be an alarmist, but a realist. We cannot give up all of these really important efforts or cut back on these efforts until the war is won, and war won't be won until we have a cure. Both in terms of treatment as well as in terms of prevention. A prevention method that is absolute and works without question. We're not there yet on either one of those, and so our prevention efforts have to be increased, strengthened, adapted, and made culturally appropriate to who we are trying to serve and who we are trying to reach. It's not communities that are hard to reach. I think our messages are hard to hear, so we really have to change our messages. Communities are there.
This article was provided by Body Positive. It is a part of the publication Body Positive.