I wrote this article for POZ, with the help of my friend, Tirdad. But, I wanted to tone it up. I am so tired of being a bureaucratic activist. Women with HIV/AIDS are in the midst of a growing movement, spearheaded by women of color. This movement is one of unity, equality and the right to live, or at least the right to fight for our lives.
It's no surprise to us that women experience HIV infection quite differently than men. Whether it's particular symptoms or drug side effects, there are clear gender differences -- and not just in obvious areas, like gynecological complications. The fact that women have less access to state-of-the-art AIDS care is an appalling fact in 1999. It directly impacts our survival and contributes in a big way to our generally worse health outcomes than men. (Although not scientifically proven, we've noticed that we get sicker with higher T-cells and lower viral loads than men.) However, another key part of whether we live or whether we die is rooted in physiology and biology. Medical researchers have been slow to recognize this fact with AIDS. It's been a long, uphill struggle to get this simple fact acknowledged. As a direct result of this lack of research, women are greatly disadvantaged. We must insist on basic and clinical research answers in order for women with HIV to make life-and-death treatment decisions. To this day, we have not seen the development of a well-coordinated strategy for conducting such research.
Since the earliest days of AIDS (women were first identified as having the disease in 1981), federal agencies have blocked the inclusion of women in meaningful studies. Because of this fact, the "feds" are our enemies. They are not our friends.
The research community is ingrained with institutionalized sexism. Researcher Norma Muurahainen - MD, an expert on metabolic function in AIDS, gives an example of the underlying attitudes: "Investigators prefer to do what's familiar and comfortable. Studying women requires doing pelvic exams, which many doctors don't know how to do or don't want to do. One wasting trial of women required doctors to measure clitoral size -- which made some male doctors very uncomfortable."
Awe, we're so sorry that the male doctors are "uncomfortable". Actually, we don't give a damn who is comfortable or not. We are fighting for our lives here! If your comfort level does not allow you to measure "clitoral size", then you are in the wrong business.
Years of vigorous "in-your-face" activist efforts have forced new initiatives in women's AIDS research, but there's still a long way to go.
The definition of a syndrome and survival
Primarily due to the efforts of ACT UP (The AIDS Coalition To Unleash Power) a national campaign was launched to expand the AIDS case definition to include women. Contrary to popular belief, this movement was lead by women AIDS activists. (Of course, many gay men were there, in the fight with us.) Women of color with HIV/AIDS were in the forefront of the movement. Katrina Haslip was there, Marina Alvarez was there, countless others who are since deceased were there. And I was there too. I would be negligent not to mention Maxine Wolfe and Linda Meredith who were also there and helped to keep us united and on track.
In 1993, after years of community pressure and public humiliation, the CDC reluctantly expanded the AIDS case definition to include some of the conditions disproportionately faced by women -- cervical cancer, and bacterial pneumonia among them.
A "shot in-the-dark"
Following the case definition expansion, the numbers of women reported with AIDS mounted. We were not surprised. We knew all along that women were dying silently, dying without being diagnosed, dying without being counted, dying in shame ... but, we weren't being counted because the things we were dying from did not fit into the narrow definition of what constitutes an AIDS diagnoses.
Still, only small insignificant trials for women began to get funding. Six years later, we still only have small insignificant treatment trials for women with HIV/AIDS. When small studies find gender differences in HIV disease, they often go unpublished and no funds are allocated to do larger follow-up studies. Therefore, conclusions are illusive and appropriate treatment recommendations for infected women are "a shot in-the-dark" approach.
Many of us believe that this is a major reason why there is still a gender gap in survival rates between men and women. Less people of both genders are dying, but more women than men are getting sick. In Los Angeles, there is a gender survival gap of 18%. This means that if you are a woman living with HIV/AIDS in Los Angeles, you have an 18% greater chance of not surviving than men in Los Angeles. And here, we have access to a myriad of services and clinical care. The national profile, I'm afraid is more grim.
One example of women's research efforts is the "Women's Interagency HIV Study" (WIHS), which observes disease patterns among women, and was launched in 1993. Yet six years later, WIHS remains underfunded and offers little guidance to providers about how to treat the disease in women. And WIHS, like much research in women, is overly focused on our reproductive organs -- such as HIV reservoirs in the vagina. What about the other viral hideouts -- like lymph nodes, and the brain- In fact, the majority of federally funded studies for women with HIV have focused on reproduction, pregnancy and transmission to others. Most women with HIV in this country are not pregnant. And, CDC statistics show that women are more likely to be infected by others than to be a source of infection. Why do government funded efforts continue to focus on what we already know- We need to ask the real questions that relate to our survival. For example; "are current approved dosages of HIV drugs appropriate for women-" We need to delve further into this phenomenon of getting sicker with lower viral loads.
Sue the f**ks
Another problem is the severe lack of enrollment of women in HIV clinical trials -- key to providing relevant information about our bodies and HIV. Under-enrollment continues to hinder the collection of meaningful data about probable gender differences in drug function.
I was among the many co-plaintiffs in a lawsuit which in 1993 forced the FDA to remove its ban on participation in trials by women of "child-bearing potential." Many clinical trial criteria spelled out "no pregnant women and no non-pregnant women" allowed. Well that took care of all of us. But other barriers -- such as requirements to use two forms of birth control -- remain, and federal recruitment efforts still fall short. And the "feds" have a ton of excuses as to why they can't recruit female subjects. Yet, as my friend Maxine (who is a researcher) always says: "If they wanted to do a study about men who are 6 feet tall, drive blue cars on Tuesday, and eat potato chips on Thursday, ...they would be able to find those men."
Women now make up 32 percent of new cases of HIV in this country, yet are represented in only 17 percent of federally funded AIDS clinical studies. This represents an increase of participation of women from a decade ago, but it is still not nearly enough. Trials by drug companies, perhaps more attuned to the way their future market is changing, have done slightly better.
Appear to metabolize
In recent years, it has become more clear to the research community, that clinical trials made up mostly of men do not provide women with the data we need to safeguard our health. (In the past, we were told by the top AIDS researchers, that "we imagine our research crosses over into women.") Well, it doesn't. Studies of treatments of other diseases show that women can experience differences in blood levels, toxicity and side effects of drugs, compared to men. There are several likely reasons for this, scientists say: First, women appear to metabolize drugs in their blood differently than men, particularly at various phases in the menstrual cycle. For example, a 1996 study (not among PWAs) showed that women emerged almost twice as fast as men from anesthesia, due to faster clearance of the drugs. Second, women generally have smaller body sizes, which means that the same dosage can cause different effects by gender. But in the field of AIDS, we still have only hints about differences in dosing, clues of metabolic differences, and suggestions of what viral load levels could mean in terms of HIV progression in women. Hellooo-! "Hints, clues, and suggestions" will not save our lives.
"Clinical trials made up mostly of men do not provide women with the data we need to safeguard our health."
We need more studies to help bridge the existing gap of HIV knowledge between men and women. It will be of great benefit, (and perhaps even help us to live longer), to women with HIV to expand scientific research that looks at gender differences in the following areas:
Viral load, CD4 count and disease progression
Last year, a study at Johns Hop-kins University found that among present or former injection drug users, women's viral loads were on average half of those of men with similar CD4 counts. No other factors - such as race, treatment history and use of street drugs -- could explain the difference. This was the third study in recent years finding such gender differences. Researchers suggested that the current recommendations for viral load thresholds for the initiation of antiretroviral therapy need to be revised for women. The federal "Guidelines for Treatment" have not been changed and the follow-up studies to fine-tune that have not begun.
Opportunistic infections, cancers and symptoms
Occurrences of these conditions vary considerably by gender. Women have more frequent infections with Candida, herpes and some types of cytomegalovirus than do men. How much of this is biologically based and how much is due to treatment access or psychosocial factors is still being studied. Why is it that when women experience disease, everyone wants to contribute it to psychology. We need science NOT psychology! Women get Cytomegalovirus because of psychosocial reasons- I don't think so!!
The way these conditions and other symptoms manifest in women often vary from that of men. A study by Italian researchers this year showed that Kaposi's sarcoma in the lungs is more aggressive in women as a result of biological differences.
Drug metabolism, dosages and resistance
With enough basic and clinical research, we should be able to determine what drug dosages are adequate for women to suppress HIV. A 1995 Dutch study found that women metabolized AZT 42 percent slower than the men in the study. The following year, Judith Currier, MD, reported that some women in a federal study (ACTG 175) of AZT and ddI decreased their dosages to avoid side effects, yet they reaped the same clinical benefits as their male counterparts who took the full dosage. Yet, still research has not refined dosages for women. And many women continue to "self-dose" which is very dangerous to our health (because we are forced to GUESS!), and could jeopardize our future treatment options and survival.
The most striking result was in a study of delavirdine (Rescriptor) -- in which 19 percent of participants were women -- which found that the drug reached blood levels 1.8 times higher among women than men, although effectiveness appeared to be identical.
Side effects, toxicity and interactions
Some studies have found different patterns of side effects among women. For example, women taking ritonavir (Norvir) were found to experience more nausea, vomiting, depression and fatigue than men. And recent studies of antiretroviral-related lipodystrophy show that women are more likely to have central fat accumulation, whereas men are more likely to have higher levels of fat and lower levels of HDL, a blood lipid that can lead to cardiovascular disease. This has led researchers like Julian Falutz, MD, to call for more investigation of the role that women's hormonal activity may be playing in this phenomenon.
Studies like these are making researchers realize the importance of including adequate numbers of women in clinical trials, and commissioning specialized all-women studies on some of these questions.
Meanwhile, women with HIV are left wondering: How long does it take a certain drug to clear my body compared to a man's- Why are so many women intolerant of therapies- What side effects am I likely to experience from my medication- Could it be that the medical establishment is mis-dosing women- These uncertainties cause many women to either self-dose, postpone, or stop HIV therapy -- which can significantly impact their survival, regardless of ethnicity or economic background or any other psychosocial reason that you could possibly think of.
At a time when treatment adherence is as valuable as the drugs themselves, we must demand answers.
They expect women to stay adherent based on the clinical experiences of only a few women included in clinical trials. The push for adherence has become so intense that women often suffer harsh and debilitating side effects in silence.
Loud women don't get the blues
As the number of HIV infections increases among women, so does the urgency for a loud and boisterous movement to demand the development of an effective strategy for a women's research agenda and to demand a federally funded concerted effort to conduct women's basic and clinical scientific research. This movement of infected women is growing. Women of color continue to provide leadership and a powerful voice in the activist effort and the numbers are growing. We are united, and we're not afraid of the feds. We're not afraid of our enemies. We are well-informed and ready to confront our opponents.
"We are not dead, and we are not giving up, and we are not going away."
Women have died of AIDS since the beginning of this epidemic. Women have been fighting for their lives since the beginning of the epidemic. Women have been in the forefront of every AIDS activist movement since the beginning of the epidemic. This epidemic is not over. We, as women of "united colors" will continue to fight until we get what we need to survive.
Fight to survive
"We have had to fight so hard, for so long, for so little because there are people who don't care if we survive and others who don't want us to survive." --Maxine Wolfe
I suppose that the "feds" and others thought that we might give-up. Or that we might all die and go away. Well, we're not dead, and we are not giving up and we are not going away.
So, sorry if that makes you uncomfortable.