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Women, Unite!

Helping Others Can Be Good Medicine!

November/December 1999

Helping others isn't just the proper thing to do -- it's also good "medicine" for people with HIV and AIDS. From the very beginning, HIV-positive people have found that doing AIDS-related work can provide a soothing tonic for the soul.

Teaching HIV prevention skills, writing letters to legislators, delivering meals, participating in political demonstrations, staffing hotlines, sitting on committees, meeting with pharmaceutical companies, even stuffing envelopes -- all can give you the satisfaction of knowing you have tried to make a difference.

While all hands are needed in the fight against AIDS, women with HIV might find added motivation in the fact that they are often under-represented in volunteer and activist arenas, especially those that involve lobbying for policy changes and negotiating with drug manufacturers.

It's not surprising that women have shied away from traditionally male-dominated fields like politics and science. However, the best way for HIV-positive women to get their needs met is to become involved in the decision-making process. You might take inspiration from the fact that there has been a relatively small but wonderfully stubborn core of HIV-positive women advocating for their sisters all along.

Even taking small steps to raise awareness is important. Consider "coming out" about your HIV status, for example -- telling the people in your life that you are HIV-positive. The news might encourage some of them to consider what they themselves can do about the AIDS epidemic.

Of course, many HIV-positive women face multiple deterrents to revealing their status. They often don't have much of a buffer against possible financial repercussions such as being fired from their jobs or being forced out of their homes. Women who are raising children need to consider how talking openly about their HIV status might affect their children's lives. Women who live in communities that are not very knowledgeable about the AIDS epidemic need to think long and hard about the possible consequences of identifying themselves as HIV-positive.

Whether or not you divulge your HIV status to others, there are many other ways in which you can make a difference -- so many, in fact, that it might be hard to know where to begin.

The process can be broken down into three steps:

  1. Identify your options.

  2. Evaluate your options.

  3. Make a commitment!!!

Identify Your Options

Ask your social worker, your doctor, and your favorite AIDS organizations for suggestions on volunteer opportunities. Consult a directory of AIDS organizations in your area. Skim through a local gay and lesbian newspaper. If you have access to the World Wide Web, search there for information.

People who live in rural areas that are lacking in volunteer opportunities shouldn't feel barred from participating. The staff at toll-free AIDS hotlines can give you advice and support if you want to "come out" about your HIV status. Some of the nation's urban AIDS organizations can provide other services. For example, via phone, fax and e-mail, Julie Davids at Project TEACH in Philadelphia helps isolated individuals and groups all over the country take part in activist campaigns. Davids (who is also a member of ACT UP Philadelphia) can be contacted at 215-985-4448, x165 or

Evaluate Your Options

It's very important that you invest your volunteer time in the ways that will satisfy you most. Trying to do work that isn't in your nature will likely lead to frustration.

Do you prefer to work with a group or work alone?

Do you want to interact with the public, or do you want to remain behind the scenes?

Do you want to meet other volunteers? (Some types of work are more conducive to this than others.)

Do you want to help with the delivery of services or with political advocacy efforts?

Most importantly, what issue or volunteer opportunity interests you the most? You are guaranteed to find more success with an endeavor that truly appeals to you than with one that you have taken on out of a sense of obligation.

There are also plenty of practical considerations, such as those relating to scheduling and transportation. If privacy is necessary, for example if you need to conceal your AIDS-related work from people in your home or work life, then raise this issue before making a volunteer commitment.

Motherhood isn't necessarily a barrier to volunteering. Some organizations provide childcare for volunteers; others offer scheduling flexibility. Or maybe you can team up with another HIV+ mother and take turns watching the children. When you are inquiring about volunteer or activist opportunities, simply raise the issue of your parental responsibilities.

Finally, consider whether or not you would enjoy the culture that you would be entering. The better the fit, the better your chances of success. A woman who cherishes her religion, for example, might enjoy doing church-affiliated AIDS work. A non-Latino woman who is interested in learning more about Latino culture might want to do volunteer work in a Latino neighborhood.

If your goals lead you to enter an environment that is foreign to you, then do whatever you can to make the acclimation easier. If you want to work with your local government, for example, then seek out mentors and allies who can help you learn the ropes. If you feel nervous about attending a meeting on drug development, then take a friend along. Also keep in mind that it helps immeasurably to have a good support system -- friends and family who will cheer on your efforts.

Make a Commitment

Make a commitment, even if it's a small one. Work one shift a month at a food pantry for HIV-positive people. Help an organization put out its quarterly newsletter. Ask your church or school to participate in AIDS fundraising efforts.

It's important to stick with your commitment, but on the other hand, consider your own needs as well. If you have health problems, then don't feel guilty about not meeting obligations.

Don't even feel guilty about being in a bad mood sometimes. HIV will do that to you. There are days when you might want to cancel a volunteer activity because you're not feeling "up for it." That's perfectly fine. But you should also feel free to proceed as planned, bad mood and all. The people you are working with, especially those who are also HIV-positive, will probably appreciate your selflessness.

Consider Joining a Clinical Trial

HIV-positive women are woefully under-represented in clinical trials, which are the tests that are conducted to investigate the safety and effectiveness of various types of medical treatment. The information gathered from clinical trials helps shape HIV treatment guidelines; hence, the more women who participate in clinical trials, the more we will know about women's treatment options. By participating in a clinical trial, you can play a part in helping other HIV-positive women receive the treatment they need.

Through clinical trials, HIV-positive people often can gain access to drugs that have not yet been approved for the public. This situation is particularly appealing to those who have "burned through" the approved drug options and believe that they might benefit from an experimental treatment. Many participants in clinical trials also enjoy more extensive health care treatment than they could otherwise afford. (Clinical trials typically offer free or lower-cost health care services and require participants to receive frequent medical exams and blood draws.) Some clinical trials also offer cash bonuses to encourage enrollment.

Unfortunately, there are some significant drawbacks on the other side of the balance sheet. The schedule can be both inconvenient and exhausting; it's not uncommon for participants to undergo weekly blood draws and physical exams. The odds of receiving an experimental treatment in the proper dosage, especially in an early trial, are less than great. This is, after all, a treatment that has not been in use long enough for researchers to know exactly how it will affect the human body -- you're there to help them learn.

The absence of a large body of information about a new treatment also means learning about side effects the hard way, by experiencing them. And finally, perhaps the most disquieting aspect of participating in a clinical trial is the possibility of developing drug resistance. If you take a potentially useful medication under the wrong circumstances (i.e. in a low dosage or in a combination that doesn't work for your body), you might not respond to that same medication in the future. Worse, you can even develop resistance to an entire class of similar medications.

With all of that said, the fact remains that under-enrollment in clinical trials is greatly hurting the female HIV-positive population. What can you do about this problem? Start by learning everything you can about clinical trials -- both the science and the politics. Stay on the lookout for clinical trials which might be appropriate for you. Urge other HIV-positive women to do the same.

If you decide to enroll in a clinical trial, you can feel proud of the fact that your effort will be helping countless other women with HIV.

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This article was provided by Positively Aware. It is a part of the publication Positively Aware. Visit Positively Aware's website to find out more about the publication.