By Jenny Starrs
Joy Morris has seen the many changes in the HIV epidemic firsthand. Morris, a transgender Chicago native, was officially diagnosed in 1986.
“Back then, HIV had high prevalence and incidence rates within the white MSM [men who have sex with other men] populations, so there were a lot of white MSMs and I think I was the only trans woman going to the [counseling] group,” Morris said, referring to the support services she went to in the 1980s and 1990s. “There were a few African American women, there were a few black guys, but for the most part it was mostly white gay men. And a lot of those kids died. I saw them die.”
Morris is one in the growing ranks of individuals who are, as she put it, simply “getting old with HIV.” As medication, prevention methods and counseling services have increased in effectiveness, being HIV positive has transformed from a death sentence to a manageable disease. But with this transformation comes a new Pandora’s box of problems.
STEADY INFECTION RATES
While new treatment methods, such as highly active antiretroviral therapy, have raised the life expectancy for American citizens living with HIV, infection rates have yet to decrease.
“In the United States, there are 50,000 new HIV infections every year. That has not changed for many years,” Dr. Eric Christoff said. Christoff is an HIV specialist with the Northwestern Memorial Physicians Group and has worked in this field since the 1990s. This unchanging incidence rate puts the U.S. behind many other developed nations, according to UNAIDS data documenting HIV infection rates from 2001 to 2011.
Ramon Gardenhire, the director of government relations at the Aids Foundation of Chicago, points out the disconnect between testing and care as one reason for this stability in numbers, instead of the decrease that most other Western countries are experiencing today. Out of the approximately 1.2 million Americans estimated to be HIV positive by the Federal HIV/AIDS Web Council at AIDS.gov, only 46 percent are regularly receiving treatment.
“This is significant because new research (from the HIV Prevention Trials study 052) came out this year which showed that individuals who are actually linked in to care and taking their HIV medications are 96 percent less likely to transmit the virus to someone else,” Gardenhire said. “So that 50 percent not being linked in to care not only has a detrimental impact on their quality of life and their healthcare, but also their ability to transmit the virus to other people.”
So in a country with the highest GDP ranking in the world, how can half of HIV positive citizens not regularly receive medical treatment? Between stringent Medicaid qualifications and complex insurance companies’ policies, one problem stands out: rising infections within minority communities.
“There’s been a transition in who gets the disease over this time frame,” Christoff said. “A lot of these patients are trending to being a bit younger and they’re a lot more African American and Hispanic and other minority groups than they are Caucasian, generally speaking.”
Leon Lieberman, 82, is an HIV positive activist who has seen this growth through his work with the Aids Legal Council of Chicago, and perhaps the reason behind it.
“In some societies, some communities, there are still stigmas. People are reluctant to be tested. If they are tested and they’re diagnosed with HIV, they’re reluctant to seek treatment because then it will be a known thing,” Lieberman said. This stigma is alive and well among young black MSMs, who have the highest incidence rates of all other population groups. Because of the correlation in the minds of many between HIV and perceived gay promiscuity, being tested and/or treated for the infection pushes individuals into the scrutiny of, and often rejection from, their communities.
While HIV incidence rates have remained stable in the U.S., that isn’t the case for these at-risk groups. “The numbers for new infections have somewhat been stagnant over the last few years except there was an uptick in young black MSMs,” Gardenhire said.
FINDING EFFECTIVE SOLUTIONS
The current healthcare system has yet to put forth solutions to face these rising infections. With the healthcare overhaul imminent and hopeful in the eyes of those like Christoff and Gardenhire, there are still gaps in what the government can realistically accomplish.
“There’s just a lot of people not having access to high quality healthcare providers in their community,” Gardenhire said. “You want to make sure you go to a provider that’s culturally competent and can understand the issues.”
The Patient Protection and Affordable Care Act cannot ensure the implementation of these programs vital to the young black and Hispanic MSM communities, especially with questions of funding facing the new system. Organizations such as the AFC fund community-based clinics and groups throughout the city, which is where many in these high prevalence groups find the help they need.
Test Positive Aware Network, a free HIV/AIDS clinic in Chicago’s Edgewater neighborhood, is one of these organizations. Since their early beginnings 25 years ago, they have seen this change in affected individuals just as Morris, one of their clients, has. Edgewater is the second highest incidence area of HIV/AIDS in Chicago, one of the cities with the highest rates in the country. To face the growing needs of a harder-to-reach community, TPAN has expanded its services past its own walls at 5537 N. Broadway St.
“We go to the bath houses, we go to bars, street festivals, sometimes we go to the ballroom scene,” said Bill Farrand, TPAN’s CEO. “We do around 2500 tests a year.” In addition to HIV tests, TPAN offers many peer-led support services and works to protect the anonymity of their patients, which helps many of those afraid of being identified as HIV positive. Morris is just one of many who take advantage of TPAN’s easily accessible services. She has been with TPAN since her diagnosis, and has seen the changing faces of those sitting around her in the support group she attends Tuesday nights.
“I’ve been positive for 31 years,” Morris said. “When I came back with my results positive, I needed to find some kind of support, and they were the support. They still are.”