June 9, 2012
Quick Facts About
In TheBody.com's HIV/AIDS Organization Spotlight series, we focus on some of the true unsung heroes of the HIV community: the organizations that support and provide services for individuals living with, or at risk for, HIV. We profile some of the best in the U.S. and learn how they got started, what challenges they face and what's in store for them in the future.
This week, we turn our sights on New York City, N.Y., and Hispanic AIDS Forum (HAF). According to the New York City Department of Health, more than 107,000 New Yorkers are living with HIV, and thousands more are positive, but don't know it. Among New Yorkers aged 35 to 54, HIV is the third leading cause of death. And in 2010, there were 3,481 new HIV diagnoses, with 1,076 of those in Latino men and women. With such a staggering number of people who need to be reached, it's important to have an organization like Hispanic AIDS Forum, which is at the forefront of providing HIV care and prevention services to thousands of individuals every day.
TheBody.com recently interviewed Heriberto Sanchez-Soto, the executive director of Hispanic AIDS Forum.
Heriberto, can you tell us how you got started with HIV work?
I started by working with youth and children in need of protection or care in residential facilities and whatnot. Soon thereafter I went into the AIDS field -- actually, when it started, in 1985. I have been with Hispanic AIDS Forum for about 13 years.
Can you tell me a little bit about how the Hispanic AIDS Forum got started?
The organization started as a forum -- a group of health care professionals and some local politicians -- concerned that the HIV epidemic would likely spread into the Latino community. Nothing had yet happened to prepare for that possibility.
Their intent initially was to inform policymakers and hope to get a response, in terms of education and some service delivery in the community. Instead, the group was offered the opportunity to incorporate and receive some funding. And so the Hispanic AIDS Forum became the first Latino nonprofit organization fully devoted to HIV and AIDS in the country.
We'll touch back on the Latino aspect in a second. How has the mission changed? Is it different? And what is it today?
It's changed somewhat, but not significantly. At the beginning, again, like I said, the mission of the organization was to educate the Latino community in New York City about the perils of HIV and AIDS, and to influence health policy and funding that would improve the lives of Latinos in New York City.
It remained basically the same mission until I came on board about 13 years ago. The mission now has focused largely on service delivery and trying to deal with all the related issues that are intertwined with HIV, such as hepatitis and other sexually transmitted diseases [STDs]. So the mission now is to bring about positive health outcomes for Latinos with chronic illnesses, including HIV, hepatitis, cardiovascular disease and so on. But the thrust of the organization remains HIV.
How many people do you serve?
The organization provides a variety of services. So, when we talk about the number of people that we serve, I am speaking about people that receive concrete services from us, as opposed to low threshold community education or condom distribution and that kind of stuff.
In terms of direct services, we serve about 6,500 Latinos and other New Yorkers. Including all the other community education that we do, it would probably be like 40,000.
Wow, that's a lot. Can you tell us a little bit about the services that you offer?
In terms of support, we organize in two core service areas: supportive services and prevention. Supportive services are those that are specifically tailored to people with HIV and other chronic illnesses -- people who are actually living with the disease. They include a rental assistance program, where we provide financial assistance to Latinos or other immigrants who otherwise do not qualify for HASA [HIV/AIDS Services Administration] services; we provide them rental assistant services.
In fact, we started to do this about 11 years ago when there were no housing services, or housing support services, for immigrants in New York City who, at the time and now, represent probably 50 or 60 percent of those affected with HIV. We started a very small program with HOPWA [Housing Opportunities for Persons With AIDS] funds. Then we were funded to do more substantive services with a bigger HOPWA contract, and we created what is called a sustainable living fund, which now GMAC runs.
Through this process, we were able to convince the Planning Council that they, too, should allocate funding for housing services for immigrants who do not qualify for HASA benefits. And we run that program. That one is called the New York City Rental Assistance Program. Combined, these two contracts probably put out about $7 million in rental assistance to immigrant families who do not qualify for HASA.
We also do, of course, case management services. We do treatment adherence services; a lot of workshops on treatment issues. We do a lot of advocacy work. And we run support groups for those who are living with HIV or hepatitis coinfection.
In terms of prevention services, our prevention services are largely targeted at Latino sexual minorities. We're talking about gay men, Latino gay youth and transgender women. Those services include a very successful HIV testing program, which we view as the point of entry to the organization. So, when people do test with us, we do a thorough risk assessment and they receive testing. If they are diagnosed with HIV, of course, they are linked to the appropriate support services and medical services. If they are found to be at high risk for HIV infection, then we engage them in risk-reduction services. On average, we test about 5,000 people a year.
Where does this all happen?
In our offices in the Bronx and Manhattan, and via some community partners throughout the four boroughs. We do not do much work in Staten Island.
We also do some of the CDC [U.S. Centers for Disease Control and Prevention]-funded behavioral interventions. In our case, we do 3MV [Many Men, Many Voices] and CRCS -- Comprehensive Risk Counseling and Services -- for gay men. And for youth, we do an intervention that we have developed ourselves. It's a peer-based program that is trying to develop sexual health leadership within young people. We take the position that, if we make a serious investment in younger gay people, it will probably have a significant impact on HIV transmission rates and the transmission of other sexually transmitted diseases in New York City. So we put a lot of emphasis on young people.
That is not to say that we neglect older gay men. But the thrust is on younger folks. So we organize our prevention services by age groups: 17 to 24, 25 to 35, and 35 and older.
Then we started the TransLatina program, which is a small program targeting transgenders who are Latinas, male-to-female, in Queens. We provide the same, comparable prevention services there.
Right now our work is shifting. We're doing more holistic work with the Latino gay community. We're trying to move away from continuing to define gay men as vectors of disease. And so HIV is addressed in the context of larger issues concerning both holistic health and sexual health. In that regard, we are doing a lot better. These days, the AIDS epidemic doesn't seem to be that urgent for the greater number of Latinos, or the gay men out there, for that matter.
Would you say there's more HIV stigma in the Latino community?
I've been around the block several times over. I don't subscribe to that kind of thinking. I think that individuals may internalize their conditions in a different way in the Latino community than perhaps in the Asian community, where some people would argue that there's a lot more stigma than there is in the Latino community, or the African community, or the white community.
I think individuals themselves tend to deal with their own life situations in a very peculiar way. And that may, in turn, translate into stigma being directed at them. So, I think it's more internalized than it is projected on them. That's my point of view.
What are the difficulties or benefits of doing HIV work in New York, or specifically the Bronx and Manhattan?
Well, I used to work in New Jersey. Some of the reasons why I decided to leave New Jersey and do this work in New York are due to the sheer numbers and the manner in which New York City deals with issues in a more open way. The opportunities for anonymity in New York City for people who are affected with HIV, I think, lend itself to be able to do more. I think people who are affected by HIV, because of some of these issues, tend to be more receptive, if you will. They turn toward services more so than people in small towns or small cities in the country, again, because of the anonymity.
There's great opportunity for anonymity. So, in that sense, the work seems to be easier to do. I also think that it has a greater impact in the overall picture.
If you look at the boroughs in New York City, I think the same could be said. It is probably easier to do work in Manhattan than it is to do work in Staten Island, or for that matter, in the Bronx. I think the way the larger communities deal with the issue makes it either easier, or a little harder, to do the work.
For us, when we did work in Queens, it was quite challenging. We started this organization by having an administrative office in Manhattan because so many other organizations were doing work in Manhattan. Then we did work in field offices in the Bronx and Queens. Then we did some work with partners in Brooklyn. But what we learned was that the greater number of people in Queens would have preferred to come to the office in Manhattan than to receive services in Queens.
The folks in the Bronx, on the other hand, tend to stay in the Bronx. They tend to be a little bit more parochial, if you will. You know, "I'll stay in the Bronx; I don't want to go into Manhattan." They really didn't have great issues in receiving services in the Bronx. And so we had to open up the office in Manhattan to provide services to those folks from the outer boroughs who were resistant to receiving services in their boroughs. They would still receive services from us, but they would do it in Manhattan.
I do think that the future of this work requires that we begin to deal with HIV in the context of a broader set of health issues, as opposed to the issue that defines an organization, or the issue that defines a client. And that's what we're trying to do.
What has the community response been like?
I think the more challenging work has been to get buy-in from some of the funding sources, especially government funding sources. Because our tendency is to deal with much of this work in a very compartmentalized way; and so when you say to them, "We're going to take this HIV money and do X, Y, Z with it," and it doesn't look like it's 90 percent HIV to them, then there's a great deal of resistance.
One big issue for me -- and I know this to be the case for a lot of other organizations -- is that when you're dealing with HIV and gay men, this is synonymous with dealing with HIV and sex. Or if you're dealing with HIV and drug users, it's synonymous with dealing with HIV and drug use. And there is still resistance to allowing us to deal with these issues in a very open and realistic way.
For example, censorship, if you will. You try to do creative work with government money, and somebody's just waiting on the sidelines, waiting for you to use the wrong word, the wrong expression, so that they can come after you to defund you.
Sometimes, a lot of the policies, the positions, the attitudes that well-meaning funding sources have are often homophobic. And the work is always driven with a tinge of homophobia. I'll give you an example.
We started to do a series of workshops on sexual health, and really focusing and trying to be very sex-positive about the work that we were doing. One of the workshops was named "Forget About Your G-Spot, Find Your P-Spot." This workshop was really about men learning to have anal sex so that they could then protect themselves and reduce the risks of HIV infection and other STDs, and also reduce damage to their bodies.
And we did a workshop on "Size Does Matter." You would think that the workshop is about the size of the penis. The workshop is not about the size of the penis. The workshop is about the size and fit of the condom.
And so a couple of funding sources called me and said, "We have heard about these workshops that you're doing. They seem to be a little racy. What's going on?" So I explained what the workshops were.
They told me, "Well, those are not appropriate workshops." And I said, "Appropriate to whom, or for whom? These are not workshops that we go deliver to little church ladies, heterosexual church ladies, on Sundays. These are workshops that we deliver to sexually active gay man. And guess what? Sexually active gay men have anal sex, because they don't have a vagina. OK? And this is what we need to do if we are going to make a serious dent on this epidemic."
To me, what they were saying was hugely homophobic, because they're trying to tell us that we should do a workshop for gay men that should be appropriate to the larger community. Well, the larger community may or may not have anal sex. And if they did, they're not going to talk about it this way.
So the funding may have been there, but I think a lot of the organizations, especially those that serve communities of color, have not until recently been able to do some serious education in a manner that makes sense for the communities. But now everybody's talking about how we need to be realistic, how we need to integrate HIV prevention into holistic health. Now we're talking about how focusing on only HIV stigmatizes people. There is stigma that is internalized, and then people don't want to receive the service and whatnot.
And so, there's got to be a revolution in the way we do HIV and AIDS work today. Things have changed so dramatically in the last five, 10 years, and the manner in which we have done it has not necessarily adapted to those realities.
Right. And to expand on the stigma you mentioned, I think it's even worse for the transgender community. So it's great to see that you offer services for transgender women. What do you say to the transgender women out there who may be lost and need help?
I need to be careful how I say this. Let me put it this way: I think that there are too many small pieces of services that are all over the place. The pieces are so small that they cannot have any impact on the lives of transgender women. And I think that part of what needs to happen is that the delivery of services to transgender women needs to come together in a cohesive program in a single place, or two or three places.
We try to do that. We have very little funding to do services for transgender women. We were providing services to them in the context of programming for gay men. It created a problem for us. And it created a problem for them. And it created a problem for gay men. Because the issues and their needs were so different. Although, seemingly, it was about sex, and anal sex, though not necessarily, the issues were far more complex for transgender women than they were for gay men.
In the end, we decided to create a collaborative in Queens with Callen-Lorde providing medical services, Bright House providing life skills workshops, the Gay and Lesbian Center providing either mental health or substance abuse counseling services, and the Hispanic AIDS Forum doing a lot of the prevention work.
That model of trying to put all these small pieces together in one place. The services were housed at Queens Bright House. So there was one location where the providers would go to and provide services for transgender women. And while each of these organizations had a small piece, we were able to do the work. But then each of the organizations was defunded. And now we can no longer provide those services to transgender women; now they're scattered all over the place again -- at least for the Latina transgender women.
There's a small organization here with $25,000; there's another organization here with $50,000; and then there's a small organization there with another little portion of money and whatnot. I think the need has come either for one single organization or for all of these organizations to coalesce and try to pull together all of these resources so that we can create a meaningful program for transgender women, and then hope that these transgender women will come and drive the process.
That's a great point. So you want to centralize it all?
Yeah, the resources are too small to be scattered all over the place. It's too fragmented. I think it needs to come together in one place, under one umbrella, either through some consortium, or maybe one organization to coordinate service delivery for them so that we're not duplicating or stepping on each other's toes and wasting the limited resources that we have.
What would you say is the most rewarding aspect of working at Hispanic AIDS Forum?
I have to tell you that I love my work. I wouldn't be able to do this work if I didn't like it, and if I didn't think it was so relevant. As the executive director, I spend a lot of time behind closed doors processing paper and at meetings and trying to make sense of things. But I always make time to see clients. And what makes it valuable to me to do this work is, for example, when a single parent, a father, who might be in my age bracket and has a teenage son who is gay, comes to our office and says, "I've heard about your program for Latino gay youth. My son is gay, and I love him. It doesn't matter to me that he's gay, although he thinks that it does matter. But it doesn't matter to me that he's gay. I don't want him on the streets, being taken advantage of by all these older men. How can I enroll him in the program?"
Wow. That's really great to hear.
It makes a difference to me when an older person who may have AIDS, and is not making ends meet, finally learns of the organization and tells us that his apartment does not have any windows and is on a third or a fourth floor and he says, "There are weeks when I cannot leave here, because I cannot make it up and down the stairs." We're able to intervene and relocate him to an apartment where he has windows, he has fresh air, and it's clean. Now he has an elevator, and now he can move about and go about his life, without as much toil.
We see this all of the time. We see it day in and day out. A lot of New York lives are so disconnected from the reality of so many people in need of the program in New York City. I am personally honored and feel privileged to be here, doing this kind of thing. And when you see a young person share his lunch with a homeless person, it warms your heart and it reminds you why you're doing this work.
Absolutely. That's so great to hear. What advice, then, would you give to somebody who's just been diagnosed and doesn't know where to go?
We would invite them here, regardless of where they are from. Don't wait a minute longer; start the process to get connected. If we are not able to provide the service, we will certainly work really hard to get them connected to someone who can provide the service, regardless of their ethnicity, the language they speak, their sexual orientation, their gender, their national origin. That's what we're here for.
And what direction is the organization moving toward?
We know that things soon will change significantly in the way supportive services for people with HIV are funded and what their availability will be. So we are looking at the manner in which we do our work very critically, and trying to make improvements every day so that we can have the greatest impact with less money.
And with respect to HIV, we are going in a very holistic way. We are going to be very sex-positive in our work. We are not going to allow anyone to force us into a closet. Our work is going to be open and empowering. We hope, in doing that kind of work, that transmission rates will drop severely in the next five or six years. I'm hoping that the work we're doing with young people will have that effect.
How can people help, or get involved?
There are many ways. People could make donations. People could do the AIDS Walk. People could convince their friends to test for HIV and other STDs. Volunteer work is always available. People don't need to make commitments of a year, nine months, six months or three months. Sometimes they could just do a one-day thing for organizations like ours, and the many others that exist out there.
More important, I think that if each and every one of us challenged the next person who speaks with bias and hatred and discrimination, speaks with the language of oppression, whether they are our parents, our brothers, our sisters, our husbands or wives, our boyfriends or girlfriends, or our employers, I think that alone will make a huge impact on the lives of people with HIV, but also in those who might otherwise get infected. Make this place a better place for everyone. That's what this is about.
This transcript has been lightly edited for clarity.
Warren Tong is the research editor for TheBody.com and TheBodyPRO.com.
Follow Warren on Twitter: @WarrenAtTheBody.
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