Important note: Information in this article was accurate in April 2001. The state of the art may have changed since the publication date.Aside from the government appointing the president and making the usual decisions as far as taxes and the rest of the laws, they also control the bulk of the money for client services for people with HIV and AIDS.
There are many HIV+ people participating in focus groups where they discuss the quality of care that HIV+ women and men are receiving in the clinics and hospitals. HIV positive people are educating themselves and each other. We educate more now than ever because of so many new medications. We learn about the HHS guidelines and we learn to talk that treatment talk with all of the terminology.
It's not easy getting involved in your disease, nor is it easy to pick up everything you hear or everything you are taught. Take it from me, it requires time and a lot of effort to learn about HIV/AIDS; how the disease works and what medications are used to treat different symptoms, and all of the different medical regimens that are used to control the virus.
And then there's "outreach". Outreach is a means that providers (including treatment advocates, such as myself) use to reach out to other HIV positive men and women. We try to reach out, not only to help link people in need to all kinds of AIDS services but we also reach out in order to mentor and educate HIV positive individuals to become advocates themselves. Being a Treatment Advocate for Women Alive puts me in a unique position. We are fortunate enough to be able to be there for you in the office, in the clinic waiting rooms and in the hospitals. We also host educational updates where we have actual physicians presenting on the latest topics. We provide these forums to allow you to ask questions directly to the physicians. We hope that these forums also help to create a very comforting atmosphere, where you feel safe asking the questions that everybody has on their minds, but may be afraid to ask.
So when you're sitting in the doctors' office thinking of all the things you want to discuss with your doctor . . . and then you forget, or if you come away from your doctors appointment still feeling confused, remember your treatment advocate. These are just two scenarios that have happened to all of us. Treatment Advocacy is a service provided for you. We can help. We're trained very well to help you work through the system of care, to help you ask those hard questions of your doctor, to help you sort through the abundance of treatment information that will help to prolong your life. Still some of us choose to seek education right away, we want to know everything. On the other hand, some of us don't seek information, our minds are boggled and after all it's the doctors job to know this stuff and take care of us. Let me tell you, NONE OF US, none OK?, none of us ever wanted to learn all this stuff about HIV and all this information about medications and how they work or don't work so well. We never wanted to have to learn it. We want someone else to tell us the best thing for us and we either do it or we don't. But, if we want to survive in this world with HIV and AIDS, then we must learn it for ourselves, for our own survival. People who know more about HIV meds are able to make more informed decisions about their own care and treatment and those are the people who live longer!
It gives me great fulfillment to finally get that call from someone that wasn't quite ready at the time of first contact, to let me know that they are now ready to learn more about how to live with this disease.
I'm only one woman living with this disease in the Los Angeles area, still I try my best to articulate the issues faced by women and especially African American women with HIV/AIDS. Although we have all these great medications that are suppressing our viral loads and raising our T-cells, statistics continue to show that this disease has devastated the lives of thousands more, right here in our own backyards. So education is key in this fight against AIDS. The tool we use is outreach. Reaching out to others comes naturally for me. I have to sometimes remember that its part of my job. The clients and members of Women Alive get great benefit from this service, but I also benefit from talking with my Peers. Peer-to-Peer communication allows us to educate and help each other. Treatment Advocacy services are more effective when delivered by people who are themselves, HIV+. The treatment advocacy programs help HIV+ people make informed decisions about their treatment. Every time I reach out to someone just like me, it's a reality check. It reminds me that someone who cared, at a point in my life, reached out to me, to educate me and to help me make informed decisions.
When someone from an AIDS service organization reaches out to you, you may not feel up to an intake at the time or you may not want to be asked for your proof of diagnosis, but take their number. There may be a time when you are ready to make that call.
"The political context in which AIDS is occurring cannot be ignored. AIDS is affecting groups that remain disenfranchised segments of American society; homosexual men, heroin abusers, Haitian immigrants and hemophiliacs. This so-called 4-H club has been joined by prisoners (most of whom are either Hispanic, IV drug abusers or both); female prostitutes; and the children of high risk groups who are also victims of poverty.
"Despite the fact that in the four years since AIDS was first recognized, AIDS has killed more people than swine flu, toxic shock syndrome, Legionnaires disease and the Tylenol incident combined, the response of the federal government to AIDS, the worst epidemic since polio, has been to ignore it and hope it just goes away. If such a deadly disease were affecting more privileged members of American society, there can be no doubt that the government's response would have been immediate."
-- Michael Callen, PWA (1955-1993)
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Copyright © 2001 - Women Alive Reproduced with permission of Women Alive, 1566 S. Burnside Ave., Mid-City Los Angeles, CA 90019; Phone (323) 965-1564, FAX: (323) 965-9886. You need permission from Women Alive to make more than one copy of any article in this section.
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