After losing some good friends to AIDS, John Barry became a staunch advocate for the HIV-positive population. Beginning his career as a case manager at the Southern Tier AIDS Program (STAP), he currently serves as the organization’s executive director.
STAP started out as a task force in 1984. By 1986, with the help of a $50,000 grant from the New York State Department of Health, the organization established an office space with three staff members, desks and phone lines. It has since evolved into a full-fledged not-for-profit organization with a main office in Johnson City. From its nine satellite offices, STAP provides services and support to eight counties in the Southern Tier region of the State.
When we think of HIV in the less densely populated areas of the state, we often assume these patients have fewer resources available than those downstate. Not true says Mr. Barry. At the beginning of the AIDS epidemic, the New York State Department of Health (DOH) made what he calls a very smart move, declaring that no matter where someone lives in the state, they should be able to receive necessary HIV services. The DOH divided the state into 14 regions and established a single agency like STAP in each of them to ensure that no one would be left without access to medical care for HIV/AIDS. In fact, because HIV is a communicable disease that carries with it the message that “everyone is at risk,” so many resources were put into combating the disease right from the start that “Our service system is now far above what any other disease like cancer has. With HIV there are 40-plus drugs that the State will pay for.” Mr. Barry notes.
What else can Mr. Barry tell us about the current status of HIV in rural New York? Some things have changed in the 30 or so years since AIDS was identified as a public health threat. However, the perception that HIV is more prevalent in urban areas of the State rather than in rural cities remains the same. Why is this? “People like to think that problems like mental illness, divorce and incest are big city issues. Everyone wants to believe that we live in Pleasantville, that we don’t have those kinds of problems here. That’s a misperception we deal with,” he observes.
For Mr. Barry, the major difference between rural HIV clients and their urban counterparts is the level of isolation and social stigma. “Isolation isn’t just geographical either,” he notes. “Many times our client’s family and social group [have] no idea what they’re going through.”
Additionally he still sees plenty of social stigma attached to a disease that results from behaviors that our society feels culturally conflicted about, like sex and substance use, especially in rural areas that tend to be more politically and socially conservative. One of the “hot spots” among the rural programs they offer is the Syringe Exchange Program. Mr. Barry explains that some local law enforcement professionals view this program as enabling, rather than discouraging, drug use in Southern Tier communities. “We try to meet with key stakeholders before we implement a needle exchange program to talk about what these programs do and don’t do. But there can still be a level of opposition.” Other officials, like the mayors in Johnson City and Ithaca, have been extremely supportive of STAP programs and their clients.
One of the cornerstones of STAP programs is case management. The work these professionals do is crucial to their clients’ long-term success. Managers help people get everything they need to remain healthy; from making sure they schedule, and keep, their medical appointments, to assisting them in obtaining housing and helping them get substance abuse and mental health treatment. There’s a great diversity of staff at the different STAP locations, a plus for everyone involved, because there is also a tremendous amount of variability in the HIV population.
Treatment literacy is one concept that works well for STAP’s clients. Mr. Barry explains, “The more information our clients have, the better consumers of health care they’ll be. Physicians don’t usually spend much time with their patients and this illness is complicated and its treatment is involved. We go to the doctor with [the patient] and we have a curriculum of 25-30 modules to teach people how to take better care of themselves.” Peers in the treatment literacy connect newly diagnosed patients to someone who’s been HIV positive for a number of years.
Harm-reduction is another tenet of STAP’s philosophy. It’s a different approach than what’s usually advocated for with certain “unacceptable” behaviors, namely abstinence or terminating current unhealthy choies. “We don’t think that’s how people change their lifestyle. It’s a much more gradual approach where we acknowledge that behaviors don’t always change overnight,” Mr. Barry says. Even small lifestyle adjustments on the client’s part — injecting drugs once a day rather than twice, for example — can reduce the likelihood of infection being spread between people. “Certainly we’d love people to quit using drugs,” Mr. Barry says. “Our first question is usually ‘Are you done having fun yet?’ It’s a tough population. The failure rate for substance users the first time going through treatment is 90 percent. Jail fixes the problem temporarily, but then they come out again and end up right back where they started from.”
According to Mr. Barry, his organization’s staff will conduct an HIV test on everyone who agrees to it, and they heavily encourage those who are on the fence about it to proceed. There’s a reason for this, he elaborates. “If you take HIV medications the way you should then the amount of virus present in your blood is low enough that you can no longer effectively transmit it to others.” Research agrees, saying that early detection and treatment of HIV can lower the risk of transmitting the disease to a partner by 96 percent. Mr. Barry also feels that targeting prevention towards specific high-risk groups like women of color or gay men has been particularly effective. STAP’s recent acquisition of a mobile van, which provides free screenings and other services to anyone, including those in the more inaccessible parts of the Southern Tier, will aid them greatly in their prevention efforts, says Mr. Barry.
In New York State, some are questioning whether HIV prevention programs are effectively changing people’s behaviors or not. In terms of statistics, it’s not always easy to accurately quantify what causes the various numbers to go up or down. However, Mr. Barry notes that New York State’s Department of Health’s county level statistics report that the number of newly reported HIV positive cases dropped from 14 in 2007 down to six in 2010, mirroring the trend throughout the Southern Tier region. “We like to think the numbers changed because of our programs, but we can’t always say for sure,” says Mr. Barry. “What we can prove is what people have learned from an intervention by asking our clients questions both before and after it.”
He refers those of us who want to learn more about the demographics and statistics for our State or the nation, to AIDS Vu, an online tool/map developed by the Rollins School of Public Health at Emory University that estimates HIV prevalence rates by factors like race and ethnicity, age and sex. The site’s interactive map provides users with a visual way to understand how prevalent HIV is across different parts of the State, including how many people have been diagnosed and are living with HIV.
Expressing concern about a new mindset among the younger generation, Mr. Barry reiterates that, even with the great strides HIV medications have made, to have AIDS is no picnic. Treatments are working much better these days but you still have to deal with nasty side-effects and be tied to a medication regime, necessitated by consistency, he notes.
Though 56,000 Americans become infected with HIV each year, Mr. Barry is happy with the work STAP is doing. “We’re holding fast compared to other public health endeavors. As a nation, we’ve done a better job in combating AIDS than we have with getting people to eat less and get in shape.” Things certainly haven’t turned out as he imagined back when he first began working with HIV patients. “I thought we’d find a cure in less than a decade,” he says. “But I’m still here. I hope I don’t have a job someday — that they find a cure. But even if they do, there will still be a need for the preventative services we offer. It’s something all the executive directors around the state discuss frequently; how we can remain relevant as an organization.”
Money and positive publicity are always essential for organizations like STAP to keep the public aware of their efforts and Mr. Barry can’t say enough about STAP’s Director of Development, Mary Kaminsky. “She’s fabulous! She got 600 people to log in 12,000 volunteer hours by making their time with us worthwhile and enjoyable.” Three of their most popular events are the Superstar Bartender Bash on the Lake (June 8, 2014, in connection with the AIDS Ride for Life), Doggone Fun on the Run (July 12, 2014), the AIDS Ride for Life (September 13, 2014), and the Fantasy Hair Warz (held annually in December). Anyone is welcome to volunteer for, donate to or attend any of these fundraisers (www.stapinc.org).
For locations on HIV testing at STAP offices throughout the Southern Tier, visit STAP’s website: http://stapinc.org/
Testimonials of Southern Tier residents who have received support from STAP’s services: