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Community Forum Summary November 1999
Update from the Women's Conference
Speakers: Andrea Dubose, a parent advocate at Columbia Presbyterian Hospital
Anna Forbes, a social worker and a representative of the Alliance for Microbicide Development
Lisa Hirschorn a doctor in HIV care from the Demet Community Health Center Roxbury, Massachusetts.
The 1999 National Conference on Women and HIV/AIDS, held from October 9-12 in Los Angeles, CA, drew close to 2,000 attendees, 800 of whom were HIV-positive women. The clinical, prevention, and policy tracks of the Conference provided a wealth of information for infected and affected women and men, and allowed those present to address a variety of concerns. The Conference occurred at a crucial time, as an increasing number of new HIV infections are occurring in women, with a disproportional number in women of color. Working together, we can reverse this trend, and ensure quality care for women who are HIV-positive.
At the Community Forum on November 10, three women discussed current medical and advocacy issues in HIV to provide an update from the Women's Conference for those who were unable to attend. The Forum speakers were Andrea Dubose, an HIV-positive woman and a parent advocate at Columbia Presbyterian Hospital, Anna Forbes, a social worker and a representative of the Alliance for Microbicide Development, and Lisa Hirschorn, a doctor in HIV care from the Demet Community Health Center Roxbury, Massachusetts. These women come from different perspectives on HIV/AIDS, but all are committed to improving the lives of the women they serve and share the common belief that knowledge is power.
An Advocate's Experience
Prior to attending the Women's Conference, Andrea Dubose was eager to learn about gaining equal access to HIV treatments for all people and about partner notification laws. As a Women's Conference attendee, Ms. Dubose was able to discuss these issues with other advocates and brought back new information to share with her clients at Columbia Presbyterian. She found the advocacy track of the Conference extremely useful, and learned skills such as using constructive conversation with doctors in order to fully access medical care. Ms. Dubose enjoyed the interaction with other HIV-positive women and the opportunity to establish contacts in the community, as it reminded her that she is not alone as an HIV-positive woman.
So What's a Microbicide Anyway?
A microbicide (pronounced "My-Krobe-Uh-Side") is a substance that kills microbes, viruses and bacteria, for example. There are no microbicides available that have been proven safe and effective for destroying HIV, and as a result, HIV transmission prevention depends on condom use (either male or female). Some women have found it difficult to negotiate condom use with their partners, and are at risk for HIV transmission every time they have sex. A microbicide could be inserted into the vagina in the same way that spermicide foams are used to prevent pregnancy, and would be a woman-controlled HIV prevention method. Microbicides are in development, and with adequate financial support, could be available on the market in 2-5 years.
Anna Forbes, a representative of the Alliance for Microbicide Development, described the ideal microbicide. It would destroy HIV without irritating the vagina, it would be bi-directional (that is, it would protect both partners), and it would not interfere with conception if a woman desired to become pregnant. Sixty products have been identified that might be effective microbicides, and some have entered clinical trials. In these clinical trials, women are encouraged to use condoms in addition to the experimental microbicides, as the effectiveness of the microbicides has not been proven.
How Do Microbicides Work?
Four different approaches to protection are under study: broad spectrum, inhibitor of viral entry, inhibitor of viral replication, and a combination approach. In the broad spectrum approach, all microbes present in the semen are destroyed. An example of a broad spectrum microbicide is a buffer gel. A buffer gel works by keeping the vagina at a low pH during and after sex. A quick chemistry review: low pH means acidic (like lemon juice or vinegar). HIV prefers a basic environment, that is, an environment with a high pH. So if the vagina is kept at a low pH after ejaculation, the HIV can be destroyed. In the inhibitor of viral entry approach, HIV is prevented from infecting the cells of the vaginal wall and cervix. One such method is the "invisible condom." A substance is inserted into the vagina, and body heat causes the material to thicken, creating a barrier to HIV. The third approach, inhibitor of viral replication, involves the use of anti-HIV medications in the vagina. This method may be useful for people who wish to get pregnant, as the medications would be active against the virus but might not necessarily destroy the sperm. Finally, a combination approach would involve the use of a broad spectrum method plus an inhibitor of viral entry method for maximum effectiveness against HIV.
Development Issues
Currently, there are twenty microbicides in preclinical development (in the laboratory) and twenty-three products in various stages of clinical trials. The development of one product can cost up to $50 million. Last year, the U.S. government allocated $21 million total for microbicide development, which was only 1% of the U.S. AIDS budget. Pharmaceutical companies are hesitant to join the development effort because of liability issues, and current government funding is not adequate to ensure timely availability of these products. Anyone who wishes to be active with the Alliance for Microbicide Development to promote better funding should contact the Alliance at 6930 Carroll Avenue, Suite 830, Takoma Park, MD 20912, 301-270-5924 or 5925 (TEL), 301-270-5926 (FAX) to get involved.
Medical Update from the Women's Conference
Dr. Lisa Hirschorn provided an overview of important medical information presented at the Women's Conference and at the 39th Interscience Conference on Antimicrobial Agents and Chemotherapy (ICAAC) that occurred in September, 1999. The bottom line from the Women's Conference, in Dr. Hirschorn's opinion, is that knowledge is power, and that women must educate themselves as much as possible about HIV treatment options in order to access the best available care. Women, and especially women of color, have historically been underserved by the medical establishment, and will be most effective as advocates for their care if they are informed. Dr. Hirschorn also stressed that advocates, patients, and providers must work in a cooperative manner in order to ensure quality care for women with HIV.
Is HIV Infection Different in Women and Men?
A 1998 study by Farzadegan and colleagues which showed that women with the same viral load and CD4 count as men progressed faster to AIDS than men sparked a debate as to whether HIV infection is different in women and men, and, as a result, should be treated differently. An important study by El-Sadr and colleagues addressed the issue by examining study data from women and men who had participated in CPCRA clinical trials. The rationale behind the study was that if women and men had received the same access to care as clinical trial participants, it would be possible to examine their disease progression in a controlled fashion. In examining the data, no significant differences were shown between men and women in their disease progression, illustrating that access to care is more important than biological differences with respect to progression.
Resistance Testing
Another hot topic at both conferences was resistance testing. There are two types of resistance testing currently available, genotypic testing and phenotypic testing. Genotypic testing works by examining specific changes in HIV that make anti-HIV drugs less effective, and phenotypic testing directly tests the effectiveness of various anti-HIV drugs against the virus in a person's blood. These tests are especially useful when determining "salvage" regimens after an initial treatment regimen has stopped working. Another important use of resistance testing is in pregnant women with detectable viral loads. Although AZT monotherapy is indicated for preventing the transmission of HIV from mother to child, many providers are using combination regimens to treat pregnant women and to prevent transmission to the fetus. Resistance test results can help determine the most effective combination regimen for pregnant women.
Side Effect Management
Women are more likely than men to experience and to report side effects of anti-HIV medications, and many of the providers who spoke at the Women's Conference addressed side effect management. If side effects can be controlled, women are more likely to adhere to their medication regimens, and will have more success in treating HIV infection. Some side effects are the result of high levels of drug in the body. It makes sense that a 130-pound woman should not be taking the same dose of certain drugs as a 250-pound man. Dosing recommendations for ddI are based on weight to help control side effects.
Lipodystrophy, the redistribution of body fat, usually accompanied by increased blood sugar and blood fat levels, is a major concern for many HIV-positive women, especially for those who take anti-HIV medications. No one is sure what causes lipodystrophy or how to prevent it, but it is a serious concern because it leads to an increased risk of heart disease and diabetes. Women experience lipodystrophy differently from men, as they are less likely to develop high blood fats, and because men and women typically accumulate fat in different areas of their bodies. Recommendations for managing lipodystrophy include eating a balanced diet and exercising. Some providers are also using the fat-lowering medications used by HIV-negative people with heart disease to try to reverse the effects of lipodystrophy.
Another "heads up" for women from the ICAAC Conference: Boxwell and colleagues presented a report on lactic acidosis in people with HIV taking NRTI therapy (NRTIs are drugs like AZT and 3TC). Lactic acidosis occurs when there is too much lactic acid in the body. The cells make lactic acid when they use glucose (sugar) for energy. The researchers reviewed FDA adverse event reports through June, 1998 to search for episodes of lactic acidosis. Patients typically had vague symptoms like nausea, vomiting, abdominal pain, weight loss, and shortness of breath. 36 of the 60 cases of lactic acidosis examined were in patients taking d4T/3TC. Of these 36 cases, 83% were in female patients, and half of the women were obese (over 175 pounds). Half of the total cases of lactic acidosis reported were fatal, and of the fatal cases, 85% were in female patients. No clear differences between fatal and non-fatal cases were noted, except higher weights in the patients who died.
Take the time to discuss lipodystrophy and lactic acidosis with your care provider, and try to eat a balanced diet and exercise to help you stay as healthy as possible.
A Note on Adherence
Programs focused on adherence have become increasingly common, as it is important to adhere to medication regimens in order to effectively treat HIV. Dr. Hirschorn touched briefly on several ideas for making treatment regimens less complicated. Providers and researchers are considering the effectiveness of once-daily dosing of 3TC, ddI, and d4T, and once-daily dosing of protease inhibitors when used with a ritonavir "boost." Another treatment in the works is "triavir" - a combination of AZT/3TC/Ziagen.
Thoughts for HIV-positive Women in the New Millennium
In closing, Dr. Hirschorn stressed the following points:
- Communication - Develop a strong relationship with your provider and with local advocates for the best results in HIV treatment.
- Use all available resources to further your knowledge.
- Monitor your health carefully and be a strong advocate for your own care - don't depend on others to do this for you.
- Ask questions.
- Support clinical trials - this is the way that we will learn more about HIV and women. Call 1-800-TRIALS-A to learn more about clinical trials available in your area.
Forum summary writer - Anne Monroe
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