HIV/AIDS Organization Spotlight: Long Island Association for AIDS Care

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 to New York and the Long Island Association for AIDS Care (LIAAC). According to the New York State Department of Health, 5,913 people were living with HIV/AIDS in Nassau and Suffolk counties, with 379 new cases in 2009. Given that rural and suburban communities are often more difficult to reach than urban communities, the programs and services that LIAAC offers are crucial to solving the challenges of HIV/AIDS in the area.

TheBody.com recently interviewed Gail Barouh, Ph.D., President and CEO of the Long Island Association for AIDS Care.

Welcome, Dr. Barouh. Can you tell us a little bit about your organization and how it got started?

Sure. We're a full-service, community-based HIV/AIDS organization that mostly works as either a hotline for incoming requests for services, or a mobile outreach, where we deliver the services directly within the community, because transportation is such an issue in Long Island.

The organization got started in 1986, at the height of the epidemic. And it got started mostly because nobody was really dealing with a lot of the HIV problems, and they were looking for different groups to deal with HIV in the community.

We were picked to be the HIV agency for Nassau and Suffolk County, and we have been working with the state, the federal government, Suffolk County, and foundations since then.

What is your mission today?

Our mission today is to take what we have done as an HIV/AIDS service provider within the community and replicate those services so that people in the community who suffer from other chronic diseases can get the same type of services that we're providing to people with HIV/AIDS: case management, help with their entitlements, help with legal issues, a hotline to call, work with their primary care physicians and clinics, making sure that they take their medications, do family interventions. We also have a food program.

We feel that the model that we've created for HIV and AIDS is so good and so important that other chronic illnesses that need the same type of services -- like diabetes and obesity, childhood asthma, cardiovascular problems and hypertension -- should also get these types of services.

How many people do you serve?

Right now we're serving about 600 people with HIV/AIDS, but we test for hepatitis C, gonorrhea, chlamydia, STDs. And for hep C, we test between 2,000 and 3,000 people a year on Long Island.

And what has the community response been like?

I would say that some communities it's harder to get into. There's a definite resurgence of HIV in the MSM [men who have sex with men] community; and that is a harder community for us to get into. It's definitely an issue in communities of color -- especially, again, where men having sex with men is very taboo and forbidden. We work well with women.

But overall, I think that people feel very safe and secure in that the way that they are being serviced and the way they are being protected makes them feel good. A lot of times when somebody's positive they don't want to immediately give up their sexual contacts. They're nervous. We work with them. They come to trust us. And we have a good relationship. So I think we are well received.

The hardest part of being received in the community, actually, is to be received by the leaders of the communities. Because it's a hard thing for them to admit that they have an incidence of these problems in their community. And because we're mobile outreach, a lot of times people say, "We don't want you in our community." So we kind of have to fight hard to be able to come into the community. Because the problems are there, but the politicians sometimes have a little trouble with that.

Why do you think that is?

I think it's because minority communities, especially in Long Island, are so hard-hit by the epidemic that they don't want to be, again, called out as not being part of the suburban community. And that's an education process. I think we've made a lot of progress, and we do well with it, but that's not so easy.

So would you say that's the biggest challenge that you face?

The biggest challenge that we face is that as the disease changes, we need to change with the disease. And sometimes the interventions that are based on the funding sources may not be the best for our constituency. But we don't really have a choice, because most of the programs that are being paid from government dollars are looking for a lot more accountability. But sometimes they're asking for programs as part of their accountability that may not be as successful here as they are in the city, or may not be as successful in the city as they are here in suburban or rural areas. They try to do that one-size-fits-all approach, and that doesn't always work.

Indeed. So with the bad economy and other HIV organizations being forced to shut their doors, how have you guys managed to stay afloat and stay successful?

I think that we've had our hard times. Let's not make any misunderstandings about that. We have lost a lot of funding, and it has been very difficult. We tried very hard to diversify the types of services we do so that we're not dependent on one funding source; that's one thing we do. And another thing is what we talked about before: We are not going to just stay an HIV/AIDS service; we're now working toward chronic care. And that is going to make a huge difference in what our abilities are, and what we can do.

I spoke to another executive director, and he said that they were moving toward a more holistic view of HIV -- not just HIV specifically, but adapting it to all aspects of people's lives. What do you think about that?

I think it's great. And I think every AIDS organization across the state is doing different things. Some of my colleagues are doing medical interventions. Some of them are doing substance abuse and mental health. We do some of that, but not licensed. Some of them are not mobile; they are walk-in facilities. Some of them are doing much, much more counseling, and dealing with those types of issues. We deal much more with our entitlement issues and our food issues, because that's what the needs of the clients are.

I think the best part about all these HIV service providers -- and why I think we're a model for other diseases -- is that we had a very rare opportunity, because people were so anti-HIV in the '80s and '90s (and still today, a little bit), to create programs that worked in our individual communities. That's why they're all so diverse; that's why they're all so different across the state, and across the country. Because we all found that what may have worked for one really wasn't important for our population. And what was important for our population may not have been needed [elsewhere].

Transportation, for example: If you live in the city, you can get on a subway. You just need a MetroCard. There's really not that much transportation in Long Island. If you don't have a car, you're kind of stuck.

That's a good point. The communities are so different, just geographically, and then culturally and ethnically, and so on.

But moving on, what would you say is the most rewarding aspect of working at Long Island Association for AIDS Care?

For me, I think the most rewarding part about this is that we don't just take care of individuals, we create programs that go beyond the individual and that will make it better for a lot of people to come.

And what advice would you give to somebody who has just been diagnosed?

I would tell people that have just been diagnosed that they need to understand that, although this is not like the old days where you're diagnosed and die within a year, there has to be something in between "It's not so serious and I feel OK" and "I think I'm going to die."

What I would tell them is that this is a chronic illness that must be managed, must be followed, and that they need to make life changes for themselves so that they can do the best and live the best quality of life. I would show them, and meet with other people, so that they don't feel so alone or abandoned, so they can see that people work, and they have many choices.

I would tell them that it's not a death sentence, but it's not something that they should take lightly. Unfortunately, we have made so much progress with HIV that a lot of people don't think they have to be bothered with it. Only 28 percent of people with HIV are adherent to their medications. That's not a great number.

It's a big issue with people when they feel good. People who don't have HIV, if they get sick and they feel like they are at death's door, and they go to the doctor, and the doctor says, "Take the antibiotics for 10 days," six days later they feel better and the antibiotic is sitting in the medicine cabinet.

People with HIV are doing the same thing. They feel better so they stop taking their meds, or they sell their meds, or whatever they're doing. But the virus is replicating and changing inside their body and when they do get sick, it's going to be life-threatening, and much worse. But that's hard to get people to understand.

It's one of the reasons why, when we work with chronic illnesses, I talk about things like diabetes. Because you've got to take insulin every day for the rest of your life. You've got to change your diet. You've got to make big changes. And people don't like making big changes on a permanent basis. It's hard. It's difficult.

Oh, absolutely. How do you think we can change that?

I think that as a society, in general, we're not doing a very good job on how we take care of our health. We need to start making changes from the ground up. And I don't just mean food, though I'm not belittling the childhood obesity problem by any stretch of the imagination, because it is a big problem. But I think that self-esteem -- who you are, how you feel about yourself, and being able to look and feel your best, from a very early age -- will help people make better choices and better decisions. And I believe that that will bring down the number of sexually transmitted diseases, HIV and other preventative health-related issues.

But that's a hard process, because that is very holistic, and looking at not just when someone gets sick. It means looking at people's lives, in general.

So from an organization standpoint, where are you heading?

I see us heading toward always doing HIV. And that's never going to change for us. That's our commitment. I see us working more with chronic care, hand in hand with HIV. I think a lot of the services we provide here will expand to provide for chronic care. I do think that's going to be a big change for us. And honestly, a lot of my staff is not so happy about that; they're a little resistant. But that is the way of the future and that is what's best for the organization. And when you do something right and you can expand into other groups, you should.

The other thing I see is that we will be much more involved in testing programs. When we first started testing for HIV, it was because they finally came out with a rapid test. And now when we do the rapid test, we can do a confirmatory test.

When they started with hep C, it was a mail-in test; you had to do a blood stick, mail it in, and wait to get it back. Now there's a rapid hep C test.

Now there's a rapid urine test to see if you have a sexually transmitted disease. As the tests become more sophisticated, that's what we're also very good at. We're very good at testing. And when we test, we get people into services right away. So I see us testing more. I see us expanding more into chronic illness. And I see us making a big change in replicating what we've done for HIV/AIDS for other things, but we're not going to leave HIV/AIDS.

The other issue that is very clear to us as an entity is that, when we look at how many people in the United States are on food subsidies, those people were our clients before other people on food subsidies. And our nutrition programs are vitally important, and food is a huge issue for our clients. I'm sure it's going to be an equally huge issue as we expand into other chronic illnesses.

How can people help or get involved?

We like people, especially young people, to get involved, and to do different programs for us. A lot of times we'll ask them to do food drives because that's a big issue for us. A lot of times there are other things that they want to do from schools.

Or adults come in a lot of times. They volunteer their expertise in areas that are just wonderful for us. So we'd like them to call, tell us who they are and what they'd like to help us do.

To support LIAAC, please volunteer your time or donate here.