1992- American Hemophilia/HIV Peer Association

Hemophilia HIV Peer Assoc


American H/HIV Peer Association

Volume 1, Number 1                                                                                                                         February 1992

Act now to keep receiving ACTION NOW!
Do you want to keep informed about A-H/HIV-PA? If you have not done so yet, you must send in A-H/HIV-PA’s green Response Form to be assured of getting future newletters.
Following A-H/HIV-PA’s initial mailing which went to 500 families nationwide, we received feedback indicating that some people were distressed by the fact that we had their names and addresses. Rest assured, A-H/HIV-PA will not breach anyone’s confidentiality.
We understand that the issues we raise are troubling to some people. Also, it is possible that HIV is not an issue for some persons on our list. IF you feel that our organization is not relevant to your, please send us simple written request to remove your name from our list. That will be the end of it.
We believe that persons in the U.S. hemophilia community should have the ability to network with each other. The majority of our list was built from other lists that were created for the purpose, explicit or implicit, of allowing persons with hemophilia to connect with each other. Everyone active in A-H/HIV-PA is a person who is living the experience of hemophilia and HIV, either by being an infected person themselves or by having a close relationship with someone alive or dead who has/had hemophilia and HIV.
It’s a fact that no other nationwide group exists which is focused on empowering persons to mobilize themselves to advance their interests arising from the H/HIV epidemic. We think that it is important that every American family touched by this epidemic have the opportunity to decide for itself whether it wants to join our effort. We have sent a request to NHF and all chapter to distribute a news release about A-H/HIV-PA. Please ask your chapter to cooperate.
The accompanying two-page summary of financial assistance program in other counties should be required reading for all Americans who have been touched by hemophilia and HIV. It shows that practically every country in the industrialized world has adopted a financial assistance program for the people caught up by the H/HIV epidemic. In these counties, the hemophilia organization have long been at the forefront of the campaign to provide assistance.
Of course, I question why nothing been bone in the U.S? But even more, I want to know why our hemophilia organization have not taken up this cause? I have heard the rationalizations like “we don’t have the resources to address this problem” and “we don’t want to upset the gay AIDS groups.” I’m sorry, but these excuses just don’t wash. I am not going even waste space here to respond to them. The bottom line, in my opinion, is that Americans with hemophilia-related HIV have been abandoned and betrayed by the groups they trusted.
I also find it noteworthy that the pharmaceutical companies are contributing to the funds set up for H/HIV population in several countries. Why do they shirt their responsibility here? Interestingly, two of the American factor manufacturers, Cutter and Alpha, are owned by foreign firms, one German and one Japanese. Both Germany and Japan require the participation of the factor makers in their H/HIV relief funds. So we have the remarkable irony of these international corporations acknowledging their responsibility in their own countries while they are doing everything they can to avoid it here!
Advances in the knowledge of the management/treatment of HIV are being made constantly. Given the potentially deadly nature of this disease and the fact that it typically takes years for new therapies to become accepted and filter down to all health care…