HIV and AIDS in C-U, part two

Posted in NEWS to Champaign to Urbana by Betsi Freeman on Wednesday, May 13, 2009 at 12:00 pm

At a recent board meeting of the Greater Community AIDS Project, Mike Benner announced that one of the residents of “Champaign House” had been missing for five days.

“We haven’t heard or seen him since the eighth of this month,” Benner said. “I did go up there and check to make sure there was no corpse or anything like that.”

Although he had failed to check in as requested, the missing resident had returned to the house by April 17. The six-bedroom house serves as a rent-free transitional housing for three to six months while residents—who are all HIV-positive—work to become independent.

Those who live in Champaign House are beneficiaries of the Greater Community AIDS Project (GCAP), which has been serving HIV-positive clients in ten counties since 1985. Largely funded by private donations, GCAP provides assistance with rent and utilities, medication, and food to HIV-positive clients, referred by case managers at the Champaign-Urbana Public Health District. According to Benner, GCAP’s interim office manager, several thousand people have received assistance from the organization.

In 2005, GCAP took in nearly $161,000 of donations and grants. In 2006, income increased to over $175,000. In addition to private donations, the United Way, a Chicago outreach program called “Broadway Cares,” the cities of Champaign and Urbana, local townships and the state of Illinois have provided funding over the years.

Georgia King of Monticello has been volunteering with GCAP since 1989. “I got involved with (GCAP) because I found out that my only son was not only HIV-positive, he had full-blown AIDS,” King said. “I knew nothing. I thought it happened other places, not here.”

King was traveling in Venezuela with her son, Greg Downey, when he became so ill he was hospitalized. That’s when she learned he had AIDS. At the time, Downey was living in Louisville, Kentucky. “I’d go down there to stay and take care of him for a couple of weeks,” King recalled. “He got so bad that I had to bring him back to Monticello.”

King found GCAP, which then stood for “Gay Community AIDS Project,” in the phone book. “I thought, ‘I’m not gay. I don’t know anything about this organization,’” King said, but she made the call anyway, and began attending “Buddy Program” meetings with her son. Downey died in 1990.

“I’m very sorry I lost my son, but out of that tragedy, I got involved in GCAP,” King said. “If that had never happened, I would still be living in my little shell, thinking that AIDS happened everywhere else.”

When King joined the all-volunteer GCAP board, there was no funding available to them. Initially, they worked closely with another organization called the Prairie AIDS Foundation, who decided to disband and give GCAP its funds. GCAP used the money—$35,000—to make a down payment on a home for HIV-positive residents on John St. in Champaign.

“For one and a half years, I spent every Saturday of my life working on that house,” King recalled. “Everybody said, ‘You’ll never make it,’ because we had no funding.”

King said most of the residents have struggled with some form of substance abuse, but in order to qualify to live there, they must be in treatment. No drugs or alcohol are allowed in the house. GCAP conducts random drug testing on residents.

GCAP also owns a six-unit apartment housing facility, which is leased to families who have at least one HIV-positive member. Residents of GCAP housing declined to be interviewed for this article.

Benner said that so far, GCAP has been fairly insulated from the economic downturn, and donations have been steady. However, Illinois’ state government has been slow in reimbursing GCAP for between $60,000 and $65,000 of grants owed since July 1, 2008.

“We have paid out that much for activities that this particular grant said they would pay for, and we’re waiting for that kind of reimbursement from them right now,” said Karen Rasmusson, interim director of GCAP. “And that doesn’t include March, that’s from July through February, because I’m getting ready to send another $15,000 bill.”

Benner said he knows other non-profit organizations in Champaign-Urbana have suffered from the recession. “Fortunately, GCAP has been around long enough…we’re financially stable, and the board has always taken care of things, so we have that cash reserve,” Benner said. “As far as fundraising goes, we’re hoping people will be as generous as we have been in the past, but we just don’t know right now.”

To raise money, GCAP holds three fundraisers per year in Champaign-Urbana: an AIDS walk in the fall, a holiday gala in the winter, and a show called “Artists against AIDS” in the spring, which provides local artists an opportunity to showcase and sell their work. GCAP asks artists to donate 50 percent of proceeds from the sale of their work.

“I guess you prepare yourself for the worst and hope for the best,” Benner said with a laugh. “I think that’s about the best way to put it. ‘Cause no matter what you bring in, it never seems to be enough. I mean, you’ve learned to decide what’s most important.”

Jessica Batey, HIV case manager at the Champaign-Urbana Public Health District, said GCAP is sometimes able to help with special needs of patients that aren’t covered by designated funds. “Often times if we have sort of unconventional requests, they can honor those, whereas our grants are very specific to the grants that we have.”

“I have a client who had meningitis a few years ago, and it left him partially paralyzed due to his HIV. Because of that, he can’t drive and the only way he gets around is by riding a bike, but he has to have a tricycle…Unfortunately his bike got vandalized. They’re very expensive, those bikes are just crazy expensive. And so he came to me and was just totally distraught because that’s his only mobility, and I was able to go to GCAP and say, ‘Okay, look. This is not something that anyone else is gonna help with. Can you guys help?’ And they did.”

Pamela Shelley, a massage therapist and lab assistant at Carle Hospital, has been volunteering with GCAP, particularly working to organize the Artists Against AIDS benefit, for the past four years. Shelley lost a nephew to AIDS six years ago, but said she is particularly concerned about African-American women who suffer from the disease.

"The numbers for heterosexual African-American females that are being diagnosed from young women to women in their senior years—that is very disconcerting,” Shelley said. “I would like there to be some more dialogue for that group.” Shelley said she’s seen various reactions from those who are HIV-positive: “In some, a point where this most spectacular passion for life appears, and in others, a total detachment from everyone, and you know, everything around them—just internalized.”

Rasmusson, who is the primary grantwriter for GCAP, said she has witnessed some of the ravages of HIV/AIDS personally. “I had a neighbor 20 years ago when we first bought our house that died of AIDS, and we watched the progress of the disease. It was horrific. It’s a wonder to me that the medical system has progressed to such an extent that we’re able to lengthen lifestyle, we’re able to keep the virus at a very low level.”

King, who speaks to students in Piatt County, at the University of Illinois, and civic groups in the Champaign-Urbana area about HIV and AIDS, said she thinks the local attitude has changed towards HIV-positive people. “I think society has learned to accept people living with HIV,” King said. “I don’t think there’s as much of a stigma as in 1989 when I was first involved.”

In fact, she said that some people are inured to the fact that HIV and AIDS are in the community. “You kind of get deadened to the reality of it,” King said. However, Erica Bauer, another GCAP board member, said students at the University of Illinois are shocked when she tells them HIV-positive people are in their midst.

“I’ll tell them the population of people with HIV/AIDS on campus, and they’re like, you see these faces, like they can’t believe, ‘Not someone on campus!’” Bauer said. “That’s like, ‘Well, what do you think?’” Bauer, a doctoral candidate in communications, received a grant to study stigma regarding HIV and AIDS within church communities. Bauer said she got the idea after discovering conflict at a meeting while trying to plan a memorial service for World AIDS Day.

“I felt like I was in the middle of this crossfire of ideas, stereotypes, issues, tension, and I said ‘Wow, there’s something here, there’s a nerve here, and so I’m going to do a study on it,’” Bauer said. “I want to understand these barriers and see if we can make the church a more fruitful—or a safer environment for people. I think the church is just a great place to kind of launch a number of different interventions and to serve the community.”

Bauer said some church members objected to the idea of memorializing homosexual people who had died, but she didn’t think that agreement was necessary on the issue of homosexuality in order to serve people. “We don’t need to come to agreement. Nothing will ever get done in any sector of life and justice if we agree 100 percent. And I think people think that’s necessary, like ‘They have to agree that this is right or this is wrong,’” Bauer said. “We don’t. We just have to agree that life is valuable, and people are valuable. And we can express love out of that.”

Bauer said she believes fear and denial are still very prevalent in Champaign-Urbana. “God says, ‘Love your neighbor as yourself.’ A lot of people believe,‘Treat others the way you want to be treated,’ that’s something that people kind of agree with. If we can shift that and say, ‘Okay, if you believe that when it comes to how you talk to people, well, let’s shift that to people that are living with these chronic illnesses, that for some reason we’ve deemed evil.’ We’ve demonized these individuals. For what reason?I think because we’re afraid.”

Rasmusson said she thought education on HIV and AIDS was a very important component of serving the community, even offering condoms and chocolate bars to a reporter on her way out. “We very much need to educate the public how to prevent the spread of the virus,” Rasmusson said. “It’s really simple and if we can convince young people especially to be very careful in their physical relationships, we can certainly reduce the spread of the virus, if not eliminate it completely.”

Bauer said the main goal of GCAP is to continue to emphasize the fact that HIV and AIDS exist in Champaign-Urbana’s “backyard.”

“I think that’s one of the things we try to reiterate over and over, that it’s here, that there’s a need to provide more resources and really access to these resources, that we need funding, we always need financial support,” Bauer said. “I think we want to fight the stigma so that people can seek the resources. Some people won’t go to the hospital or won’t put it on their insurance because they don’t want people to know. When you have to live at such a high level of secrecy, there’s stress, hypertension, there’s a number of other things that are affected as well as caring for HIV and AIDS in your life.”

Related Articles:

HIV and AIDS in C-U part three

HIV and AIDS in C-U part one