For HIV and AIDS sufferers in Champaign-Urbana, taking care of their health requires a team of professionals.
Marla Francisco, who is 46 years old and HIV-positive, moved to Champaign from Indianapolis in fall 2002. She contracted HIV in 2004 after what she called a “binge”: a relapse into using crack cocaine, during which she exchanged sex for drugs. She has been taking a drug called Atripla, which combines three different HIV medications into one, for about nine months, with minimal side effects. Her viral load is undetectable, meaning that under 75 copies of the virus per milliliter can be found in her blood.
“The meds are really working for me, so I’m really pleased about that,” Francisco said.
More than one million people in the United States are living with the HIV virus, according to the Centers for Disease Control, who estimate that 56,300 people are newly diagnosed every year. At the end of 2007,there were 18,368 people living with HIV and 35,304 cumulative AIDS cases in the state of Illinois, according to the Illinois Department of Public Health. The Champaign-Urbana Public Health District is currently serving 292 HIV-positive clients.
Francisco said she hasn’t suffered many symptoms from HIV. “I have so many other physical problems that I really don’t feel that any of them are caused by the HIV/AIDS,” she said.
Francisco takes an arsenal of drugs; Clonidine for hot flashes, Tizanidine, Oxycodone and Tramadol for back and arthritis pain, Allegra and Flonase for allergies, Protonix for acid reflux, and a Combivent inhaler for asthma. She lives in mental health housing in Urbana, where she pays $221.50 for rent out of a $694 monthly Social Security check.
Jessica Batey, one of four HIV case managers at the Champaign-Urbana Health District, counts Francisco as one of her clients. It often falls to her to break the news to newly diagnosed patients that they have HIV.
“My job, fortunately, is nice in that we have a lot to offer people who are positive. And so I’m able to sort of pick up the pieces and put a positive spin on things, hopefully, and help them focus on all that we have to offer, because there really is,” Batey said. “We have a lot of services that are available for people who are positive, and that helps a lot.”
Batey said reactions from new HIV-positive patients tend to vary.
“Some people come in and already sort of have an idea that they’re positive, and so they’re just looking for a sort of confirmatory ‘yes you are,’ you know. Some people have no clue. And those are much harder to deal with,” Batey said. “I just had a new positive last week that was like that and she had no idea. She just really didn’t expect that that was going to be the case. It was just one of those, ‘Well I’m here to get tested because so-and-so said it was a good idea’…And those are obviously much more difficult.”
Batey said that she advises clients that they don’t have to tell anyone about their status except for sexual partners and those with whom they might share needles.
“We have clients that are totally open about their HIV status and they are out and about in the community, and they’ll tell anybody who will listen that they’re positive, and it doesn’t bother them,” Batey said.“However, as a case manager, I must say that I don’t typically encourage that of my clients…HIV is sexy information, and I think it’s really true that it’s one of those things that when people find out about it, it’s just too good a secret to keep.”
Batey said there were 55 or 56 new HIV-positive patients diagnosed in Champaign County in the past year, more than any previous year. She said this may be attributable to better word-of-mouth that testing is available at the district.
“One other trend that’s sort of increasingly alarming and yet good too, is that we’re seeing a lot of pregnant women. The state now has testing, mandatory testing for pregnant women, and because of that we’re seeing a lot more positives among women who are pregnant,” Batey said. “And I say that that’s good and bad, because of course it’s good that we’re finding them, because that means we can get them into treatment and care and make sure that the babies are HIV-negative, hopefully.”
Jeffery Erdman, who works as the lead agent of HIV prevention at the district, said Champaign County’s seroprevalence rate–the rate of HIV-positive patients among the population–is between three and six percent, compared to a one percent national average.
“It could be that there’s more HIV in our community, but it’s more likely that we do a better job of working with our clients and finding where the positive people are and getting them into services,” Erdman said.
Batey said that younger and younger patients are becoming infected with HIV. “A lot of the new positives are in their very early twenties, and we’ve even had a couple of teenagers in the past couple of years, which from a case management standpoint is really alarming,” Batey said.
The Champaign-Urbana Public Health District has a contract with Carle Clinic’s infectious disease department, so patients are primarily sent there for care. The district pays for care for patients with income up to 400 percent of the federal poverty level, and also helps many clients pay for utilities and rent.
Erdman and Batey said that about 55 to 60 percent of HIV-positive people in Champaign County are African-American, reflecting similar statistics in the state of Illinois. “I think it’s an access issue. I think African-Americans have less access to health care,” Erdman said. “I think they’re offered less access in a lot of ways by the system, not necessarily our system, but by the health care system in general, I think there’s a lot of discrimination out there.”
Erdman said that the most at-risk population continues to be gay men.
“The greatest proportion of the HIV cases and AIDS cases are in men who have sex with men, followed by probably injection drug users and then the heterosexual community,” Erdman said. “And that trend has continued, although we do see more in the heterosexual community than we’ve ever seen before.”
Most of the district’s clients pay for medication through the state’s AIDS Drug Assistance Program, which covers over 150 different HIV medications and drugs that treat side effects from the drugs. “We are very lucky in Illinois that our legislature supports both care and prevention and they fund it very well,” Erdman said.
Medication for HIV has become much simpler and more effective over the years. However, side effects from HIV medications can include nightmares, gastrointestinal problems, diarrhea, and constipation. Some patients have even developed diabetes.
“In the beginning they were giving people huge doses of AZT (azidothymine), and it was just making them horribly sick rather than making them better,” Batey said. “So over the years, they’ve tweaked things, and things have gotten so much better. However that’s not to say that the medications are still easy to take, because they’re not.”
Janet Jokela, head of the internal medicine department at the University of Illinois Urbana-Champaign, has been working with HIV and AIDS patients in the area since 2000. She said newly infected patients now are more hopeful because they know new drug cocktails are available to prolong life. “The downside of that is that people may not be as careful with their behaviors, you know, or take all the precautions that would really protect them from getting infected in the first place, because you think, ‘Oh, I have this cocktail, I can just take the cocktail and I’ll be fine.’ It’s not that easy,” Jokela said.
Darrell Scott has been working at Carle Clinic in the infectious disease department as an adherence counselor for the past three years to help HIV/AIDS patients stay on their regimen of medication. “A good day is when you follow up or you talk to someone who’s just starting on meds, and they’re gung-ho. They’re more than willing to go the extra mile to take them as they should,” Scott said. “A bad day can be those individuals that you’ve talked to on numerous occasions…about taking their meds regularly. They don’t do it—now they have full-blown AIDS.”
Scott doesn’t counsel all the HIV-positive patients in Champaign-Urbana; he talks to the hardest cases, the ones who aren’t initially willing to take care of themselves. “It can be from ignorance, downright stupidity; they just don’t want to do what they’re supposed to, but the majority of it is ignorance,” Scott said. “They don’t know…basically what I do is try to re-train their minds why they should do it. The person has to be willing to. You have to be willing to want to change.”
Scott works with about 70 HIV and AIDS patients, referred to him by the doctors in the clinic and by case managers at the Champaign-Urbana Public Health District. He said about 65 of the patients are also dealing with some kind of mental illness, including schizophrenia, depression and alcoholism.
Over the last three years, three of Scott’s clients have passed away. One wasn’t taking his medications, and refused most of Scott’s calls. Another, a drug addict, died of an overdose. A third, who Scott believed to be suffering from dementia, committed suicide. “The one that killed herself bothered me, because I felt there was more I could do,” Scott said, adding that he had initially been taking her to mental health appointments, but was told by his superiors to stop.
“Last Monday I went to a client’s house and she had just gotten out of the hospital, and she was one of the ones who was newly diagnosed with AIDS. And I looked at her labs. I think I’m the one that told her. And she hadn’t been taking her meds for several months…I looked at it and I said, ‘Your T-cells have dropped below 200. You know this is reclassified now…You have full-blown AIDS now. How do you feel?’” Scott recalled. “And she says, ‘Well, I did it to myself. I guess it’s time to take my meds.’”
Scott went to visit the client again after a hospital stay, and discovered there was no food in her house that she could keep down. He went to Mike Benner at the Greater Community AIDS Project to pick up food for her. “I’m in certain trenches with certain people who are more apt to need a red flag,” Scott said.
Scott said there is no magic formula for when a patient needs medication. “We have one guy that’s been positive for over 22 years that’s never been on medication,” Scott said. “I had one woman last year that I met for the first time. Three months after she was diagnosed, she was already resistant to one medication, and they started her on meds immediately.”
Scott said if someone contracts the virus from a person who was not adherent to medication, the newly infected person may also be resistant to some forms of treatment. “I want to scream when I hear that,” Scott said. “You’re not only infecting these people without telling them, and there’s ways to prevent it, you’re limiting what they can take…more likely than not, they don’t care…I’ve heard several people, ‘Well, I’m infected, why not infect somebody else?’”
Francisco has an on-again, off-again boyfriend, a truck driver who lives in Indianapolis (whose name she asked to have concealed). When she told him about her HIV-positive status, Francisco said she was shocked that he still wanted to have sex with her. They used condoms for intercourse, but he balked at using protection during oral sex. She consulted with a friend on the Danville AIDS task force, who told her that the risk of a female transmitting HIV to a male that way was “very minimal.” She relented after he promised to be tested for the virus within the next two months.
It is possible to become infected with HIV through oral sex, and the risk factor is unknown, although it is less than the risk of contracting HIV through vaginal or anal sex, according to the Centers for Disease Control and Prevention.
The Champaign-Urbana Public Health District provides supplies to injection drug users, advertises on Web sites including Facebook, Craigslist and Gay.com, and is poised to begin using text messaging with some clients. A mobile van also offers HIV testing at gay bars, homeless shelters, and other places where high-risk community members might be found.
“If you work in HIV and you work for a health department or work for a community-based agency, you have to actually think outside the box and you have to be available when your clients are available, and that means different hours, different times, different places,” Erdman said.
HIV and AIDS in C-U part three