Women Living With HIV/AIDS

Michigan HIV News, Summer 2000 Issue

While the growing numbers of women infected with HIV are an among urban Blacks, there is a group that would remain invisible in the suburbs and rural areas if it weren’t for two Michigan women who have become national figures in the war on AIDS.

Kathy Gerus-Darbison and Lisa Taton are veterans of the hemophilia community’s early battle with AIDS, as well as heroic advocates for the special issues for women living with HIV infection. They are walking miracles of perseverance with the ever-changing drug regimens, while continuing to work tirelessly for the cause. Currently, Gerus-Darbison is the education coordinator for MAPP and Taton is a prevention consultant with HAPIS.

In 1985, Kathy Gerus learned her HIV status along with her husband. She began her public life in AIDS work in a leadership position for the Women’s Outreach Network for the National Hemophilia Foundation (NHF) in the fall of 1989 and started serving as co-chair the following year. From there, Gerus became chair of NHF Board of Directors and then vice-president. At the same time Gerus was on the board of NAPWA (the National Association of People With AIDS). She also served on President Clinton’s National Advisory Council on AIDS for four years, up until December 1999.

Lisa Taton met Gerus in 1992, when both of their husband’s were very ill with AIDS, through a support group sponsored by the Hemophilia Foundation of Michigan. “For me the issue was to become open (about having AIDS),” said Taton, who has been living with the knowledge since 1988. “My husband and I were very closeted about it.”  She started her activism on a local level in the Ann Arbor area, with what was then called Wellness Networks (now HIV/AIDS Resource Center – HARC) at the end of 1993.

Taton then got involved with the AIDS Clinical Trials Group (ACTG) as the NHF representative.  “I actually learned a lot about treatment advocacy through that venue – there were good opportunities to train through,” she said.  “NAPWA (National Association of People With AIDS) and NMAC (National Minority AIDS Council) both did a lot of treatment advocacy.

“There were very specific issues at the time, not necessarily for me as a woman, but for people with bleeding disorders, who I represented, and they had very different treatment needs.”  There were co-infections -- hepatitis, parvovirus and other viruses -- that were contracted through blood products at that time, as well as the bleeding disorder itself, which complicated treatment for people with hemophilia who had AIDS.

Young widows by the end of 1992, Gerus and Taton both got involved in one of the first human clinical trials, for delaverdine. “We figured we didn’t have anything to lose at that point,” said Taton.

They only found out about the study because of Gerus’s cousin, who worked for Upjohn. Gerus then told Taton, who was at first reluctant to participate because she had promised her husband that she would not get involved with a phase I trial.  (At this level of trial, the researchers are seeking the right dosage and so the risk of side effects is greatest.) But at the time she had an extremely high viral load, “one of the highest of those going into the study,” said Taton.  “And basically, I thought I was giving my body up for science.” At that point, the only drugs available were AZT and DDI. And since AZT was making her very ill, she said she wasn’t even offered DDI.

As far as the two women know, there were only two other women in that study.  “I had to really advocate to get in there,” said Taton. “Even though they said they wanted women and I had this connection, I had to keep calling them asking ‘when is the study going to start up?’” she said. “I was very persistent. In retrospect, I see that there was really very little interest in seeing what was going on with women in clinical trials.”

In an off the record conversation with one of the investigators, Taton said the investigator acknowledged that most researchers never kept records of women early on in the epidemic because they never thought it was going to be a problem for women. “Potentially they had all of this information that could have been kept. Most of the women at that time were IV drug users, women who are viewed by our society as..,” said Taton. “Not important,” finished Gerus-Darbison.

Both women said they were held up to a very different standard than the men in the study. It all seemed to revolve around the researcher company’s obsessive fear that they not be pregnant or get pregnant during the course of the trial.

While the plight of the African American community has moved to the front lines and now headlines the national media, the hemophilia community has slipped from view. The statistics of infected female partners of men with bleeding disorders are not showing up on the demographics radar.

“We know there are more women besides the two of us in the hemophilia community, but we don’t even know who they are,” said Gerus-Darbison. “I think for the most part, the women in the hemophilia community who are infected are still very closeted. Confidentiality is a huge issue. We are talking about a community where HIV ruined a lot of relationships,” she said.

The CDC estimates that 30% of partners of men with hemophilia are infected. The issues of discrimination and stigmatization are deep for the men who, Taton said, were treated like they were developmentally disabled because of their special physical needs as children. They have tried so hard to overcompensate and “be normal,” said Gerus-Darbison, “that they wouldn’t disclose.” This put many wives and partners at risk because the men did not want to draw attention to their hemophilia by discussing the risks of HIV infection.

“Now there are laws around this issue of notification of sexual partners,” said Gerus-Darbison, but that was a contentious issue when she first got involved. “There have been a lot of issues for couples in the hemophilia community that were obstacles to prevention,” said Taton. “Women did not want to make their spouses feel guilty or untouchable because of their HIV infection.” “Women are trained,” she said not to do “anything that is going to upset your husband.”

During the time that Gerus was on the Women’s National Outreach Network, NHF held trainings to help empower women to “become peer educators in their own communities.”  They talked about safer sex, negotiation skills, and “delved into all of the issues that surrounded why people were getting infected, why they weren’t practicing safer sex. CDC put a lot of money into the hemophilia community to do these major workshops and trainings.”

It was a terrific prevention education model that was piloted with the hemophilia community in the late 80’s and early 90’s, said Gerus-Darbison. These were trainings of several hundred women from around the country who were to go home and provide this information to others.

Many of these women would come to the national training, having been encouraged by someone at a local level to go, not having a clue what they were in for, said Gerus-Darbison. These were not necessarily infected women, but they were caretakers who didn’t take care of themselves. “Many of these women had never spoken with another human being about this whole issue of HIV, let alone that they were infected or their husband was infected. They would never have those discussions. So it gave them a safe place to come and talk and – fall apart – which happened in many cases,” she said because of the stress and the fear.  “You know that someone in your little town is going to find out and your house is going to be burned down, because – you know – it happened. And it’s not that much different today, the stigma and discrimination.”

There was another issue, said Taton, “that many people don’t want to talk about now and that was that the hemophilia community did not want to be associated with the gay community. And it wasn’t just the hemophilia community. The straight community in general did not want to be associated with the gay community. Most people from the hemophilia community are (now) very compassionate because they have had the same struggle (with stigma and discrimination), but that took a while.”

“For the women, in the early years, there was the issue of defending their husband’s manhood,” added Taton. “Even at the National Hemophilia Foundation level, when I first got involved, absolutely nothing was said about HIV and the connection with hemophilia,” said Gerus-Darbison. “That’s why the Ryan White family was left to flounder on their own,” because the board of NHF did not want to be identified with HIV, agreed both women.

“I think that by the time the hemophilia community wanted to get involved (nationally), the gay community had already done a lot,” said Taton. “It was too little too late,” said Gerus-Darbison.

“I remember one time there was a discussion when I was HARC’s board president, where there were some issues with the hemophilia community trying to get legislation passed for compassionate relief for people infected through blood products; and I was told by members of the gay community that they would not support that.  I had to point out, ‘this organization is for people with AIDS; it’s not a gay organization. It should serve all people with AIDS, and not all people with AIDS are gay.’”

Taton said she understands why there was this attitude by the gay community, because the hemophilia community had a similar experience.  After all the work that they put into passing the Ricky Ray legislation (to provide financial relief for people infected through blood products) with no help from the people living with AIDS due to blood transfusions – because they did not want to be associated with HIV – this group wanted to jump on the bandwagon at the last minute to be able to reap the benefits of the financial awards gained by the work of the hemophilia community.

There were, however, some real issues for both Taton and Gerus-Darbison – as women – which separated them from the gay community. Not to mention the enormous emotional issue of child bearing, there were also emerging some real physical differences for women. They knew that women usually progressed faster to AIDS and that women were having problems with cervical cancer and breast cancer, said Taton.  “Nobody was doing any studies on that however,” added Gerus-Darbison, “and they still aren’t.”

“Women were losing their hair. Kathy and I were both losing our hair,” said Taton. And nobody in their support groups of gay men cared about these issues. “They basically thought, ‘oh, she’s whining.” “She’s whining about her hair,” laughed Gerus-Darbison.

Taton then decided to start a support group for women.  She needed to be with other women and to see how they were dealing with the issues particular to women. “In a lot of ways, it’s the loss of – your womanhood,” said Taton. At the point when she had outlived two support groups, she decided to give up support groups altogether. “It’s not supportive to see your friends die,” added Gerus-Darbison.

Both agreed there is a special stigma for women with HIV. They are viewed either as a “prostitute” or as a “vector of disease.”  Men are told to use a condom, women are told to stop having sex, they said. “You get it from the medical community; you get it from family members, anybody who finds out,” said Gerus-Darbison. “If you’re dating, you’d better be dating people who are also infected,” said Taton. “Because you have no right to be with people who aren’t,” stated Gerus-Darbison, who remarried in 1998 .

Sitting across from these women, looking healthy and energetic, close friends who laugh at the absurdities of some of the challenges that they have had to face these past fifteen years as women living with AIDS, it’s hard to believe that they are veterans of this war. It’s hard to believe their war stories, but each nods in empathy as the other tells her story.

The armor of humor comes down as they discuss a deeply heartfelt issue for both of them, one no man can ever truly comprehend, the very complex issue of childbearing.

 “Having to deal with the being told in my late twenties, ‘you can no longer do this,” said Taton. 

In the early years, when the primary issue was husbands who were infected, there was no information available to couples in the hemophilia community. They were told nothing about sperm washing, for example. Basically they were told not to have children. And if they were to disclose that either husband or wife had HIV, they would have been denied adoption, they said. 

“So the people who really wanted to have kids took the chance of getting infected,” said Taton. Both women have very strong feelings about the way they and women they know personally have been treated over this very controversial childbearing issue.

Many women have observed that studies on women have not been about women. They have been about the risks for unborn children. Taton and Gerus-Darbison are both concerned about the way the 076 trial (which showed AZT significantly lowers perinatal transmission) has been held up as doctrine. When in fact, it was a very small sampling of women studied and the long term effects are still not known, Gerus-Darbison pointed out.

“It’s always been about ‘you’re going to do what we tell you to do,’” she said. “And that’s why they didn’t have information for women, because they didn’t want women to make any kind of choices. I have major issues with that, not only from a personal level but also for all of the women around the world who are living with HIV.

“How little women really know, even today, about the drugs that we are taking. Many of them have not been tested on women before at all. They don’t know how (drugs) affect hormone levels and about all the other stuff that’s happening to women, because they’ve never bothered to study it. And this is the year 2000.

“Any woman that you talk to has plenty of horror stories to tell (about care issues) and they are not all from years ago. It’s a specialty; it’s not something you can just play with. Even doctors who are really involved and read a lot about it can make humungous errors.

“When women have side effects from these drugs, you know what your doctor says to you, ‘You’re just going to have to deal with it.’ Or ‘Are you depressed?’” “It’s not depression. It’s the drugs.”

“I have been thrown into early menopause, either from the HIV or from the drugs,” said Taton. But my gynecologist who knew I had HIV looked at me (without any exam) and said ‘you have enough estrogen.’” She then visited her infectious disease specialist. “He did an estrogen panel, and sure enough I was low in estrogen.”

“Not only was I pissed off that I was being insulted by (my gynecologist) but I had to pay this man.”  Gerus-Darbison had an experience that mirrored this with her own gynecologist.

Adding insult to injury, these women learned over time to advocate for themselves when the care and treatment they received was clearly not in their best interest.

“At the beginning I was afraid,” said Taton. “I had this bow-down-to-doctors attitude. I had never been sick, so I didn’t know how to work the medical system. I didn’t know I had a right to see my medical lab work.  A lot of it’s been my own education. I’ve had to be a really strong person and advocate for myself. I’ve had to turn into a bitch to do that. There is a real tendency to think if a woman has a problem she is either over reacting or it’s psychological.” 

Both women contend that this paternal and condescending attitude of medical professionals has further jeopardized their health. They have not been given advance warning about possible side effects of some of the antiviral drugs that they have been prescribed. For Taton this resulted in one life-threatening episode.

“I don’t care what (the doctor) thinks he might plant in someone’s head,” she said. “You tell people that this might happen. But I think there is an (attitude) that you can’t do this with women because they are going to get hysterical.”

Each woman went into detail about episodes they have had with their doctors where their questions, symptoms and side effects were blatantly dismissed. “And this is from women who are empowered and knowledgeable,” said Gerus-Darbison. “I can’t imagine how 99% of the women – just in this county – are treated, let alone in the rest of the world.”

“How many women go away (from their doctor’s appointment) thinking they are nuts, and to live with the symptoms,” asked Taton. “And they wonder why women die quicker than men,” said Gerus-Darbison.

That being said, Taton pointed out that Michigan is one of the best places to live for services, medication and care. “It’s scary the things we have heard from other states,” she said. Gerus-Darbison said she has found one doctor in particular here, a specialist at DMC, who does not fit the male medical stereotype they had described.

“I think our health department – and I would say this even if I didn’t work there – is wonderful,” Taton said. “Very proactive,” added Gerus-Darbison. “Very cutting edge,” Taton said. “The questions are asked – whether there are gaps in services – and they are constantly being addressed.”

They both acknowledged that having private insurance, they are more fortunate than the women from disenfranchised communities. “At least we don’t have to deal with Medicaid. And when you get into managed care, with all of the gatekeeper crap, that’s a whole other issue,” said Taton.

Return to the top of the page / Return to the Home page/ Go to the Site Map (TOC) page / Search this site / If you have comments or questions about the site, please send e-mail to info@mihivnews.com