HIV/AIDS Organization Spotlight: AIDS Coalition of Southwestern Pennsylvania
January 16, 2012
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 southwest Pennsylvania and the AIDS Coalition of Southwestern Pennsylvania (ACSWP). According to the Pennsylvania Department of Health, the 11 counties that ACSWP serves have seen a steady increase in HIV/AIDS cases, rising from 2118 in 2003 to 3078 in 2008. Given that 10 of the 11 counties are rural, and the typical lack of HIV awareness and reporting in rural communities, the actual number of people living with HIV in this region may be much higher. To help combat these rising numbers, the ACSWP plans, advocates and supports the development of culturally competent, comprehensive systems of high quality care, prevention and education services.
TheBody.com recently interviewed Doyin Desalu, M.S., M.P.H., Dr.P.H., the executive director of the AIDS Coalition of Southwestern Pennsylvania.
Can you tell us about the AIDS Coalition of Southwestern Pennsylvania and how it got started?
Sure, this is a new name for us. Our name changed from the Southwestern AIDS Planning Coalition to the AIDS Coalition of Southwestern Pennsylvania. We're the Ryan White Program, Part B planning consortium, one of seven in Pennsylvania. We were incorporated in 1992 in response to the Ryan White Care Act funding that came through that time. We are basically responsible for getting the most critical prioritized HIV/AIDS care services out on the street to persons living with the disease. We do this through science to some extent, needs assessment, looking at the surveillance information, doing consumer surveys, provider surveys, key informant surveys and needs assessment methodology. Basically, that's what we do, but what we're really all about is to make sure that those services are quality. We have an 11-county region in the southwest corner of Pennsylvania. When you take out Allegheny county, the rest is mostly rural. So we have challenges of getting services out to the rural counties.
Yeah, I want to ask you about that later. But first, are you more of a planning council or do you also provide direct services?
No direct services at all for us. The only thing that we do is to coordinate events and respond to new research or new policies that may come through. But we do not do direct day-to-day client services work. We do have a consumer advisory body as a board committee of the coalition comprised of persons living with HIV/AIDS. Basically, it's because we plan for services for them that their voice is very critical, so we do have that body to have input into all the planning processes.
So once you figure out plans and responses, do you then send them out to other organizations that do provide direct services?
Right, we make sure that we have diverse membership of the coalition, which includes those organizations that do provide services and sometimes those that are just interested. And some of them are AIDS related, like drug and alcohol and mental health, because we share the same clients for the most part. They're all members of the coalition and they're all involved on our different planning committees. And so the plan is bottom up from this planning committee. Once it's done, it's disseminated because those providers then use the information for the RFP (request for proposal) process. They use the information to see what services have been highly prioritized. They use the information in it sometimes to shape their services and to write their RFP. So that's where the connection comes in.
What have been some of the major points or issues that have come up?
We hold priority setting workshops that have broad participation of a lot of the stakeholders. It's very clear where our priorities are, for prevention services, what our priority populations to be targeted are. This is disseminated widely. Our plans are on our website. We make sure that the community knows what's needed, what to respond to, and we tackle the problem that way. We hold technical assistance sessions. If there's any new finding out there that's relevant, we get a speaker in to talk about it. We're also very fortunate to have the headquarters of the AETC (AIDS education and training center) here and so they do a lot of education and training as needed to respond to emerging issues.
You said technical issues. Is any of that related to the Internet or social media?
It could be related to anything. We also are the clearinghouse for information coming in from the state, CDC (U.S. Centers for Disease Control and Prevention), HRSA (Health Resources and Services Administration) and we use the electronic media in dissemination very often, more so than we used to. We used to take bundles of mail to the post office, I remember, in the 1990s to send information. We use electronic media quite a bit now. Membership is easily 75 to 80 folks, so we get things out through the electronic media to them and we tell them to send it on to people that may be of interest.
Do you know how effective the information you provide is?
Well, I assume that people do whatever needs to be done. Because we do have provider meetings and sub-grantees that have funds for services -- we also have quarterly meetings for that -- so we know that that critical mass at least gets the information and uses it. We haven't measured our general membership roster, the effectiveness or how much of that information gets used. We assume that it's given to them and hopefully it's something that assimilates and they carry with them going forward.
Well has there been just general positive feedback from people? Or just appreciation for the information?
Yeah, we get email responses back, "Thank you for this." We have that feedback from people that do that. Obviously, not everybody thinks to do that. We do responses like that.
Now you mentioned a little earlier about being in a rural community. Is that a big challenge?
It definitely is. We used to have a number of rural service providers. For one reason or another, a lot of them have chosen not to continue doing HIV/AIDS services. Some of them are very small agencies and can't keep up with the important issues. A lot of the services are on a reimbursable basis, so a lot of the small agencies in the rural communities don't have the money to put forward first to do the services and then get reimbursed later. So we've had challenges like that. And we've had quite a number of rural service providers opting not to continue to do the work.
So rural services is a challenge -- continues to be. We have a rural issues advisory body as a committee of the board that keeps that focus on the front burner for us. So it's something that we're aware of and we keep working at, but it is a big, big challenge, in addition to the stigma.
Right, and arguably, because there's less HIV awareness in rural areas, there's less understanding of the disease. And since it's usually smaller communities, people are closer and everybody knows each other, so they don't want to reveal their status, in addition to the lack of funding, so it's tough.
Yes, all of the above. But we had an issue once that a rural provider opted not to continue services because they were serving two of the part B regions. When we found a provider who took over in a county in our region, the caseload doubled. Apparently, the folks were not accessing services because it was being provided out-of-county. So we have seen both sides of that coin. There is that issue of people who don't want to be seeing access to services in their neighborhood, but at the same time, we've seen people coming forth because it is in their neighborhood.
What would you suggest doing to overcome those challenges of rural services?
You know what we've been doing for a long time [is] serve on the human services council of our rural counties and also to serve on the housing-related committees in those counties. Most of the counties have a human services council of some sort. So our staff are members of that committee, so that we keep HIV/AIDS on the agenda of those committees. We tell them the resources that are available.
We've also been doing what we call information exchange forum. It's like taking it out to the county. So twice a year, we take one of our rural counties and we do a half-day meeting. We have speakers come in on issues related to that county as far as HIV/AIDS-risk is concerned. So for example, if that county has very high teen pregnancy rates, STI rates, drug and alcohol issues, we'll fashion that meeting around those topics and get people around those topics because it's more pertinent to their county.
And then what we've done that we've been really, really successful with is to start placing these meetings in health care settings. So we use a hospital in those counties, so the clinicians don't have to go far to come to these meetings. We've been drawing bigger and bigger participants and more clinicians at those meetings, so we afford them the opportunity of education on HIV/AIDS risks for their counties, resources that are available across the region. It's actually an eye-opener because sometimes they feel that they don't know what to do if they come across an HIV-positive person. But it's like, "We're here. Use us. This is information for your county." So that's been really successful for us.
This article was provided by TheBody.com.
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