In the late 1980s, many in the hemophilia community felt they were not getting the answers they sought. The Committee of Ten Thousand (COTT) and the Hemophilia-HIV/Peer Association were formed to demand more information and transparency while holding accountable those who allowed the HIV/AIDS epidemic to spread so widely through the community. Below is a partial transcript of the first edition of COTT’s newsletter, The Common Factor.
The Common Factor
The Newsletter of the Committee of Ten Thousand
Issue one April 1992
Welcome to the first issue of The Common Factor, the newsletter of the Committee of Ten Thousand, an organization by, for, and of people infected with HIV through blood and blood products.
COTT is dedicated to the belief that, through information and action, persons with HIV can have long, productive and meaningful lives. The Common Factor will be a forum for discussing treatment options as well as our emotional challenges and triumphs.
The HIV community, especially the gay community, has done a tremendous job of providing information about treatment options for infected persons. We are in great debt to the people of Project Inform, AIDS Treatment News, the Bulletin of Experimental Treatments for AIDS (BETA), the Critical Path AIDS Project, ACTUP, and the many other publications and organizations that have stressed the need for HIV+ persons to be educated about and in control of their own medical treatment. That aggressive attitude and that information should be extended to persons infected with HIV through hemophilia and invasive medical procedures.
The Common Factor will regularly include timely articles and updates about FDA approved drugs, clinical trials, drugs in development, nutrition, holistic therapies, and information about how to get access to different treatments. Each issue will focus on one “standard” treatment and one “alternative” therapy. To survive this virus, we need to understand how it works, how to inhibit it, and how to protect our bodies from its destructive effects. It may not be enough to rely on conventional therapeutic strategies. COTT and The Common Factor will not recommend any particular treatment, but we will advocate knowing the options and acting aggressively to stay alive.
Persons with hemophilia and HIV are sexual beings – not a profound statement, but one that has been ignored. Avoided, or dismissed by much of the hemophilia community. We feel that there is a need for a forum to discuss matters of sexuality openly, unashamedly, and positively. Questions about safe sex, transmission, guilt, joy, disclosure, and everything else are all very complex and difficult. The Common Factor will provide a place for that dialogue, as sex and sexuality will be a continuing feature of this newsletter. There will be many perspectives, and probably even a few arguments. We strongly encourage all of you, men and women, to send in your thoughts and participate in this important discussion.
Another continuing feature will be essays about coping strategies. We each cope differently, but we can learn from each other’s experiences and outlooks. Feel free to give the rest of us insight into how you manage hemophilia, HIV, and life. Maintaining health is essential to staying alive, but maintaining and/or developing a healthy attitude and sexuality is vital to living.
We will discuss how public policies, legislation, insurance companies and other impersonal forces affect people with HIV. An important focus will be the particular concerns of persons with hemophilia and HIV: the HIV care provided in Hemophilia Treatment Centers, the development and availability of clotting factor concentrates, class-action suits, compensation, hepatitis C, and oh so much more.
Among people with hemophilia and HIV, the level of understanding about treatment issues varies widely—some people read everything in all of the journals and AIDS publications, some sample a few articles, and some don’t have access to much HIV information at all. An important goal of this newsletter is to provide something for people in each of those groups. Whether you have followed the intricate differences between d4T and 3TC or only know about AZT and ddI, we hope to provide something for you to think about. Please let us know if we are meeting your information needs.
Living with HIV is a continuing challenge. It is a challenge to our health, our relationships, and to our self-esteem. But that challenge also presents an opportunity. An opportunity to become wiser, deeper and more loving. I truly believe that the people that take the challenge become better (and older) human beings. So, as always, if you’ve gotta have a life-threatening condition, you might as well make the most of it!
Good luck, good health, and thanks for reading.
By Gregory J. Haas