On a crisp and sunny October morning, a Cook County HIV and AIDS clinic that occupies the back half of a one-story brick building in south suburban Ford Heights hummed with activity.
In one of the offices, which doubles as a dental clinic, counselor Brian Taylor was talking with Jay, a man whose 53rd birthday was tinged with sadness–”his wife had died of AIDS six weeks earlier. Models of rotted and healthy teeth stood on top of each other on one of the shelves in between the two men.
A sturdy man with large-frame glasses, an unblinking gaze and a mustache, Jay explained in a deep voice that he had not realized that the three bouts with double pneumonia she had during the last two years of her life were because of her weakened immune system from the virus.
His wife had tried to tell him that she might have the virus, he said, but he didn’t take the idea seriously because he felt she was a hypochondriac prone to exaggeration.
“Maybe she was onto something,” Jay said. “It was probably my fault that I didn’t believe her.
“Once I came to grips that she had AIDS –¦ long prior to her passing, she declined any type of medication. –¦ She was a very religious woman who didn’t believe in any outside intervention,” he said.
Taylor, 30, wore a t-shirt and blue jeans and had thin sideburns that ran like a river past the diamond earring that perched in each ear. His tone toward Jay combined deference and assurance, but his question was direct: “There is no way to know how [the news] will affect a person who is positive. Is this something that you are really ready to handle?”
Jay, who wore a navy blue sweatshirt, said he had tried unsuccessfully to get tested at a local hospital. “The fact that I’m here–”I’m here because I want to know my status,” he said. “I want to get the test and find out exactly where I’m at right now.”
Taylor drew blood from Jay’s finger, letting the first drop of blood fall before he took the one he would use for the test.
The answer would be known in 20 minutes.
Taylor is part of a team that consists of a doctor, pharmacist and social worker. The team rotates, spending one day a week in clinics in Ford Heights, Phoenix and Robbins.
They have plenty of work in Chicago’s south suburbs.
Among the state’s poorest, these communities are part of suburban Cook County, an area that has the state’s second highest total of reported AIDS cases–”and a rate that increased 5 percent between 1996 and 2005, according to data from the Illinois Department of Public Health. Chicago’s rate of reported cases dropped close to 50 percent during those years.
A wide ranging area rife with transportation difficulties, a decentralized, less available and less specific set of services, and low patient awareness driven in part by a strongly felt sense of social stigma interact to make the suburbs a particularly difficult area to stop the virus’s spread.
To compound the issue further, data on reported cases for HIV and AIDS outside Chicago, Evanston, East St. Louis, Oak Park and Skokie are available only at the county level in Illinois, making it difficult to zero in on specific areas where the virus is spreading quickly.
“When you look at the largest group being men who have sex with men, it’s pretty easy to target those groups in the cities because they live, work and go out to the bars in a pretty confined area,” said Bradley Daehn, Region 1 HIV prevention project director at the Winnebago County Health Department. “That’s not the case in the suburbs, where people travel into the city to do some of those things but probably are not accessing services while they are there.
“The other big piece is that a lot of people being infected in the suburbs are minorities, so they have to deal with cultural biases, mostly from within their own communities,” Daehn said.
Ron Simmons, president and chief executive officer of Us Helping Us, People Into Living, a nonprofit in Washington, D.C., that specializes in HIV and AIDS services for black gay and bisexual men, said people dealing with the virus across the country face similar dilemmas.
“We have to deal with the stigma, AIDS-phobia and homophobia so that people have less stigma about accessing the services that are there,” he said. “Given the stigma, we shouldn’t be surprised that people go the city and should try to accommodate that somehow.”
Suburban Cook County had a total of 195 reported AIDS cases in 1996 and 204 reported cases in 2005–”an increase of 5 percent. In Chicago, meanwhile, the number of reported AIDS cases plummeted 48 percent from 1,536 in 1996 to 801 in 2005.
The growth was not limited to suburban Cook County. Each of the collar counties–”DuPage, Kane, Lake, McHenry and Will–”all had increases in reported cases.
Of the nine counties with an increase in the number of reported cases from 1996 to 2005, Kane had the highest increase, nearly doubling from 19 reported cases in 1996 to 37 in 2005.
Lake and Will counties followed, with increases of 67 and 46 percent respectively, according to health department data.
Curt Hicks, Region 8 HIV prevention coordinator at the Cook County Department of Public Health, cautioned against reading too much into the reported cases data because the year of diagnosis and year of reporting can vary by as much as 10 years.
But in the south suburbs, the move from HIV to AIDS was often very rapid. In 2007, nearly half of the 24 patients in the three clinics diagnosed with HIV received an AIDS diagnosis at the same time, according to data from the three clinics. An additional two patients received an AIDS diagnosis within one year of HIV diagnosis.
The advanced state of the virus is just one of many obstacles suburban service providers have to confront.
Among the others: a nearly nonexistent public transportation system and people with low access to cars. As a result, patients can have trouble getting to the clinics during the hours they are open. The three Cook County clinics in Ford Heights, Phoenix and Robbins are each open only once a week.
The suburban area that the three clinics cover is 56 square miles, and the train does not go beyond 95th Street, more than 15 miles north of the Ford Heights clinic.
Adding to the transportation woes is residents’ low awareness of available services. John Kowalski, a doctor based at the Ruth M. Rothstein CORE Center, has worked at the Ford Heights clinics since 2002. He said he often gets patients coming to Chicago for treatment until they realize that there is a
clinic nearer them. Taylor said he has done extensive outreach in the community, going to schools, churches and other community meetings. But he acknowledged that the word about available services has not spread completely.
The outreach difficulties are a symptom of a more diffuse method of providing HIV services in the suburbs than in the city.
The Chicago Department of Public Health tries to match services with the epidemic to neighborhoods and ZIP codes, according to Christopher Brown, assistant commissioner for STD, HIV and AIDS at the Chicago Department of Public Health.
But suburban strategies tend to be much broader since data collection is done on a countywide basis, rather than by community area.
The Reporter contacted the health departments of the 10 biggest cities in the state besides Chicago. Of the 10, only Arlington Heights, Cicero and Elgin had independent public health departments, while Peoria and Springfield had departments that were part of the county health department. Neither the Arlington Heights, Cicero nor Elgin departments provided HIV and AIDS services.
“Outside of the city, [services are] far more decentralized,” said Daehn of the Winnebago County Health Department. “They have one-third of the funds and far more geography.”
Another major factor: heavy layers of denial and a sense of stigma. Many say this is particularly acute in suburban communities, which often are smaller and more intertwined than urban areas.
“It’s a societal stigma [that] is heightened in small communities,” said LeNedra Wallace, a clinical therapist and member of the suburban team.
Jackie feels it.
A 47-year-old who wears purple lipstick and orange-reddish highlights in her dark hair that she wears in a bob haircut smiles when she talks about going on outings like hiking in southern Illinois with her husband or tending to her garden that this year yielded crops like collard greens, wax beans, jalapeno peppers and squash.
But her rounded face clouded with pain and eyes started to mist when talking about being HIV positive.
Jackie has been positive since 2004 but has not shared her status with her children, who are 26, 22 and 18 years old.
Sometimes she raises the topic in a general way with her friends, but their response discourages her from revealing her status to them. “They might not be as friendly,” she says. “I don’t know if they’ll go spreading [the news].”
And even those who share with others say they have their limits.
Marcus, a lively 23-year-old with a black Yankees hat tipped to the side atop a bright red bandana, is a Hazel Crest native who says he contracted the virus from the first man he had slept with.
When he first came to the Ford Heights clinic, his T-cell count had been so low he was classified as having AIDS. The team helped nurse Marcus back to health and swung into action again when he went off his medicine and his lips swelled up like pillows.
Now back on his medications, Marcus has a new problem. The house where he lives with his mother, stepfather and two younger siblings has had the gas and water turned off.
Marcus needs to take medication daily with food and water and fears that the strategy he had developed of going across the street to a friend’s house would eventually lead to his being discovered, and, ultimately, to word of his status being spread around the community.
Marcus says he has told a few people about being positive but isn’t looking to expand that number.
“Of the people I kick it with, the information I have is too mature for them to understand,” he says. “Otherwise, they’re going to take it and run with it.”
But not all people feel that way.
Stacey Traylor, who works at the clinic as a peer educator, is also a patient. The slender mother of three with an easy smile contracted the virus from a man she saw briefly while separated from her husband in 2005.
Far from keeping quiet about her status, though, the vivacious Traylor said she talks openly about being positive.
She does so in part because she believes her physical vitality contradicts stereotypes of people who are HIV-positive: visibly sick and incapacitated.
“It’s not just about me,” said Traylor, who is studying to be a nurse. “[I like to] be out there and let people know that it could be anybody.”
On that October Friday at the Ford Heights clinic, that person could have been Jay.
While talking with Taylor, Jay stayed calm as he shared his knowledge of HIV and AIDS, as he explained that he knew he would always have to wear a condom for future sexual activity.
Jay talked about other subjects, too: How he wanted his son to show discipline and desire in his life and how he hoped his son would return to college. He talked and talked as the minutes crept by.
Jay’s voice stayed steady as he spoke, but he kneaded his thick thumbs more and more vigorously.
Twenty minutes. Then came 30, and then 40.
The results were ready, but Taylor kept listening. “He never had an outlet to express how he really felt,” he said later. “His wife had been that outlet. I was just allowing him to spew everything he wanted to discuss.
“That was paramount that we give him the time to discuss all the questions he had because they were weighing on his mind,” he said.
Finally, Jay had no more questions. Taylor gave him the result.
Jay exhaled, shook his head and looked toward the ceiling.
Relief coursed through his body, relief at the result–”and relief that his desire to know the truth had outweighed his fear of the virus that had led to his wife’s death.
“He should have come in a long time ago. It took his wife’s death to motivate him,” Taylor said. “He was happy because he could finally close that chapter of not knowing.”
After Jay left, Taylor did not stop to rest or reflect. Instead, he turned to the paperwork from Jay’s visit before finalizing the details for an upcoming support group meeting and working on a monthly newsletter. There were other patients to see, and representatives from a drug company were presenting at lunch time.
“We always have a lot to do,” he said.