This installment of the "archive e-newsletter" focuses on a very painful, controversial, and divisive era in hemophilia history. The attached scanned image is of a publication, dated February 1992, named "Action Now", published by Michael Rosenberg and the American H/HIV Peer Association. I've also included excerpts from several books, also in the "archive" which provide additional context on the era, as well as Rosenberg himself.
"The Emergence of Hemophilia Activism"
"In the early 1990s, a sudden and dramatic change was to occur in the hemophilia community. Buffeted by knowledge of extraordinary levels of HIV infection among those with the most severe form of the disorder, the difficulties of seeking redress through the courts, the acts of discrimination that had so injured children seeking entry to school- the August 1987 burning of the home of the Ray family in Arcadia, Florida, because their sons had attempted to enroll in school was but the most egregious event- hemophiliacs began to embrace a new militancy. It was a militancy that borrowed from the AIDS activism that emerged within the gay community, but that at the same time carried with it a perspective that was to set apart those who became infected through blood products. Finally, it was a militancy that would shake the relationship between hemophiliacs and their families on the one hand and the National Hemophilia Foundation on the other and would raise troubling questions about the extent to which physicians who had cared for hemophiliacs had betrayed their fiduciary responsibilities."* "At roughly the same moment, organizations reflecting the sense of disaffection emerged on both coasts. In Massachusetts, Jonathan Wadleigh began to organize the Committee of Ten Thousand (COTT) as a support group for hemophiliacs who believed their needs had not been met by the National Hemophilia Foundation. On the west coast, Michael Rosenberg took a more aggresive stance as he organized the Hemophilia/HIV Peer Association. It was Rosenberg's vision that would ultimately inform and shape the fury of those who had come to see their plight as the consequence of profound institutional failure, although it was COTT that would take on the more enduring organizational form."*
Rosenberg's "Causes and Effects of the Hemophilia/AIDS Epidemic”, (also contained in the "archive”), "can be read as a manifesto of the new militancy. In it, Rosenberg laid bare his claims against those who had failed American hemophiliacs. A 'genocide' was occurring because of the 'commercially driven practices of certain large pharmaceutical corporations.' The 'reckless disregard' of the manufacturers of processed plasma and the failure of the FDA to alter 'unsafe medical industry practices' were responsible for the HIV epidemic among hemophiliacs"* "The voice of protest was also a call to action, and in November 1992, in what they described as a turning point, dissident hemophilacs brought their protest to the annual conference of the Hemophilia Foundation. At a sidewalk demonstration, protesters carried red stained pickets declaiming 'AIDS, the Avoidable Tragedy.' Inside the conference center, protesters wearing death masks confronted 'the corporate mass murderers' in the commercial exhibit space. A 'shame list' of physicians who had betrayed their patients by testifying on behalf of phamaceutical companies in litigation on corporate liability for AIDS was presented. It was a list that was indistinguishable from the medical leadership of hemophilia treatment. Demonstrations like this would be repeated in the next years at NHF conferences. The hemophilia community had become a house divided."*
"Although Rosenberg spoke of 'constructive dialogue', he depicted the situation as a great wave of alienation within the hemophilia community between persons with hemophilia and their families, on one hand, and on the other hand, the hemophilia institutional structure- including the National Hemophilia Foundation, the chapters, the other grant-based or publicly funded organizations presumably providing services to persons with hemophilia, and the personnel of the hemophilia treatment centers."** Rosenberg asserted that "the hemophilia organizations are still in denial about the extent of the phenomenon before us." He used the term 'we the alienated', saying that 'we do not identify with the hemophilia institutions' and do not need 'an organization that cozies up to the corporate factor-makers...' He called for seeking financial relief in the form of a 'serious class action suit against the pharmaceutical giants for guaranteed comprehensive health coverage, or government subsidies like those granted to hemophilia families in Canada and in more than twenty other countries, or some combination'." **
The new militancy was on display at the National Hemophilia Foundation in Indianapolis in 1993. "Meetings like this used to have an atmosphere of genial comraderie-almost like extended-family reunions-among the foundation, its chapters, the patients, and the doctors. Even the drug companies would attend, setting up 'infusion suites' in which patients could treat themselves if they needed some clotting factor, or parents could inject it into their children. At this meeting, however, the atmosphere was different, poisoned by the rising toll of illness and suspicion. The drug companies were nowhere to be seen; or for that matter, were some of the prominent doctors."*** " 'It pains me to say this, because my father was the vice-president of the NHF', shouted Rosenberg [at the meeting]. 'But the foundation has become the handmaiden to the industry!' He then announced that the class action suit the rebels had filed would name the foundation as one of the defendants."*** "Later a group of activists staged a demonstration outside the convention center, which TV crews had rushed over to cover. Some of the demonstrators wore black cloaks and death masks. Others, like Rosenberg, had no need to do so: Everyone could tell, merely by looking at him, that he only had a couple of months to live. At this point in his life, only anger sustained him. They waved placards: 'HEMOPHILIA HOLOCAUST'. They chanted: 'My loss, their profit!' and 'Shame! Shame! Shame! Shame!"*** "Rosenberg hobbled between the marchers and the media, a participant and a commentator at once. 'This is the et tu Brute,' he proclaimed. 'This is the history of shame and betrayal. These were the people that were supposed to protect us'."***
Interestingly, page three of the "Action Now" newsletter featured in this email contains an anonymous letter from a community member stating that "I would like to see a monument in memory of all in the hemophilia community we have lost to HIV."**** The goal of the "archive e-newsletter" is to preserve our past history for those who are not aware of it. Along those lines, I'd like to acknowlege and personally thank the Committee of Ten Thousand (COTT) for its effort to establish a national memorial for the thousands of hemophiliacs who have lost their lives to HIV/AIDS and hepatitis C. For information on the memorial project and how to contribute to this effort, please contact:
Terry MacNeill 112 Lexington Rd., Dracut, MA 01826 978- 937-9857
Mary Lou Murphy 71 Winfield St., Needham, MA 02492 781- 444-8672* "Blood Feuds, AIDS, Blood, and the Politics of Medical Disaster", E. Feldman, R. Bayer, Oxford University Press, 1999, pgs. 38-40. ** "Blood Saga, Hemophilia, AIDS, and the Survival of a Community", S. Resnick, University of California Press, 1999, pgs. 178-9. *** "Blood, An Epic History of Medicine and Commerce", D. Starr, Alfred Knopf Inc., 1998, pgs. 342-3. **** "Action Now", M. Rosenberg, H/HIV Peer Association, Vol. 1 Number 1, February 1992, pg. 3.