"Our task is to help women advocate for themselves and other women," said Executive Director Cathy Christeller as she speaks of the Chicago Women's AIDS Project. CWAP, started in 1988, was the city's first support group for women living with HIV and AIDS.
"This was an issue that we were discussing as an issue of solidarity with gay men," she said. "It was only after we started looking into HIV that we realized it was a sexually transmitted disease therefore it's going to hit women and it must be already hitting women."
At that time, few services were provided for women with HIV. Christeller said when and if they found support they felt uncomfortable because they didn't have a place to go to that dealt with them as women, understanding that they had children and [ usually male ] partners.
Most women had young children and most had partners that were injection drug users ( IDUs ) . Many did not know their partners were IDUs. Some knew about their partner's drug habits. But some knew about that drug addiction and even joined in. Some couples went through recovery, putting their past behind them. Christeller said several years later some had full-blown AIDS.
"Doctors were not diagnosing that in women, it wasn't an expected diagnosis," said Christeller. "Most women were very ill by the time they found out they were infected."
When CWAP began, the organization was in a Victorian blue house in Edgewater. The clients began calling it The Blue House because of its color.
"The Blue House was really an important focal point of support, care and therapy for the young women," said Christeller. "Our folks usually did not make it past a year or two after coming." Back then CWAP focused their work around death and dying for mothers with HIV or AIDS. The services included how to leave a legacy for their children such as videos, letters and pictures. They also threw a lot of parties. Mother's Day, at the time, was one of the biggest celebrations.
Although many of the original clients passed away within a couple of years, there are some who still live today.
One woman is Waver Franklin, 56. She is a psychology major at the DePaul Truman Ridge Program. She been positive for 31 years and contracted the virus from a blood transfusion during a hysterectomy in 1981, but she didn't get tested and diagnosed until 1988. Franklin was having a hard time with the diagnoses and was talking to a friend who told her about CWAP. At the time Franklin lived around the corner from the organization.
"We finally called them and a woman named Novella Bently answered the phone," said Franklin. "I said hello, 'I'm calling because I'm an AIDS victim.' And Novella said, 'no you're not! You're a woman living with AIDS. I need to see you,'" she said.
"So I went around there and I never left," Franklin said. Franklin is very active with CWAP. She is an advocate for women and children with AIDS. She also does outreach, education and prevention. She also helps organize the projects and is on the board of directors.
When Franklin first came to CWAP she got general support for her diagnosis. Fellow clients, who are now deceased, walked her through activism, advocacy and public speaking. She still gets mental health support from the organization.
The demographic at the time was young mothers between the ages of 32-35, mostly Caucasian and Hispanic women. "I think many of those women in the early days died very quickly," Christeller said. "I think that anyone with a history of needle use is less likely to get optimal care," she said.
CWAP also had was involved with the community. They helped create daycare for the children of women who had HIV or AIDS. They were also a part of the struggle of making sure women were able to make choices about pregnancy and get the support they needed. "There was a lot of negitivity about women choosing to be pregnant, so there have been long-standing struggles," Christeller said. Some of the struggles she was referring to were poverty and lack of affordable family housing.
"Having subsidies is excellent but most women want to be in their own place with their own family. They don't necessarily want to be in HIV-segregated units," she said.
CWAP's prevention program has been involved in STD clinics for 19 years. They started out by doing condom promotion in the waiting rooms. "When we started that, they weren't giving out condoms. You'd go in with gonorrhea and weren't walking out with a condom. You got a pill but you did not get prevention," she said.
Christeller reminisces about meeting with the city's commissioner of health during that time to tell him that condoms needed to be handed out to people, only to be told they were in a drawer in the nurse's desk. "That was a radical concept, health departments were not giving out condoms, they were doing treatments. There really was not an orientation to prevention," she said.
"We pushed and said we want condoms. Only in the past number of years are there barrels of condoms," she said. Although they were involved with getting condoms out to the public, they were still scarce at the time.
"If you look at their budget for buying condoms, it's gone up and up and that was due to pressure," Christeller said. "Looking at prevention as a public health issue has always been a part of our perspective because we know that women and communities of color are much more likely to get their health services through public health, not private health. And so it really makes a difference what you do in the public health sector."
"It was really emotional for me," said Christeller as she speaks of the recent rediscovery of pictures of some of her now-deceased clients. "During the recent move I showed some of our young staff a picture of us on the front lawn of the Blue House."
Today they are located at 6363 N. Broadway, a building with several unrelated offices as opposed to the Blue House. They also have offices not only on the North Side but also on the South Side at 2317 E. 71st St.
"We've got an aging population now and we've got a lot of grandmothers, it's very different from what it was then," Christeller said, adding that although it's good that women are living much longer, some are still living in extreme poverty. The combination of extended family, poverty and the threat of relapse means that it's hard to maintain care. The national Women Interagency HIV Study ( WIHS ) shows that one in four women who need to be on medication are not.
Since the start of effective multi-drug therapy there is a large decrease in mortality. However, 20 percent of the deaths in women are unrelated, according to WIHS ( pronounced WISE ) . WIHS is a 20-year longitudinal study of women which was set up by women doctors and researchers. And that was the case even before HAART ( Highly Active Antiretroviral Therapy ) started in the mid-1990s, Christeller said.
"It's very important because it really is tracking women through a whole lifetime of living with HIV," Christeller said. WIHS is not a medication intervention. The women are on different treatments, but it helps people look at the life conditions that women are struggling with.
"I think what you see now is the struggle for us as advocates for women between the sort of federal definition of maximizing good care and our goal to maximize women's lives," said Christeller.
About 83 percent of CWAP's clients are African-American women. Christeller talks of how the epidemic is now concentrated in the Black community. "It has to do with the community at risk, it's not individual behavior," she said.
"In reality your risk is based on who your partners are. When you outlaw needle exchange and you fail to fund it for all these years, then you're going to have that early transmission among needle users and those needle users are infecting their partners," she said.
Christeller explains that although the drug users may have ended their former lifestyle, clean needles were never there and they pass on HIV/AIDS to their partners, making it a heterosexual epidemic. She also comments on men on the down low, men who have sex with other men and do not tell their female partners.
"I think lack of disclosure to partners cuts across all sexual orientations. It is not distinct of men on the so-called down low that they don't disclose. Heterosexual men don't disclose that they're positive, injection drug using men don't disclose they're positive, so I think it's really unfair to blame bisexual men uniquely that they don't disclose," she said.
CWAP's prevention program has been part of STD clinics for 19 years, including with male condoms. Now they are part of a campaign called Ring on It, which is all about getting the female condoms out there to the public. "Those are much more expensive and that's been also a big struggle that they didn't want to give them out. We had an issue of doing both purchasing and saying that it's still going to be advantageous to get them out there more regularly and not hide them away," Christeller said.
CWAP serves a small number of Hispanic women but it's hard to serve them due to location and language barriers. At their annual conference they make efforts to bring in Hispanic women by having workshops in Spanish. It's a conference for and by women with HIV. The conference usually has about 100 women. "We definitely want to have every group represented," said Christeller.
At the conference they tried starting a dialogue with women about the issues of why African-American women are at high risk for HIV/AIDS and why women in general are at risk of dying earlier.
CWAP also has peer-lead support groups on the North Side every Monday and Saturday. They also have individual therapy at the North Side office on Thursdays and Fridays.
In their South Side office they hold groups bi-monthly. The Lawndale Christian Health Center on the West Side, at 3860 W. Ogden, also has groups twice a month. The West Side group is one of their newer groups. "We try to provide a group or an outing or communication with the younger women," Christeller said. There is a network called Sassy Sisters for younger women. "The younger women are more likely to be working and are more likely to have toddlers, so it's really hard to hold all of that together," she said.
Part of the reason they need that young network is because there is a big age gap there. "It sort of makes you look at the age distribution on the charts. You can see for both men and women there's this group that's aging with HIV. That median age use to be in the 30s, now its 44 and we have women who are reaching 60, unheard of before, " she said.
As far as thinking if they thought they'd last this long, "I think about it a lot now because I'm concerned about the fact that some of the organizations have folded," Christeller said. "I think back in the day there was such urgency in terms of just taking care of people, giving them hope, celebrating being alive, celebrating their strength as women and mothers. That urgency meant that you really didn't think of the future."
See cwapchicago.org/ . Or call 773-262-5566 for their North Side office or 773-955-8709 for their South Side office.