Look Back in Anger: Hemophilia, Rights, and AIDS
Kirp, David L.
On a warm afternoon in the autumn of 1996, a limousine pulled up at the gates of the Bayer AG plant in Berkeley, California, and a handful of young men piled out of the car, megaphones to the...
...in Japan, a charismatic adolescent who has been the symbol of the hemophilia movement—represent the successful adoption of familiar tactics of identity politics...
...Not only in the United States but in scores of nations, people with hemophilia, historically quiescent, became a vocal group with an identity, an animus and a strategy...
...Gayled AIDS organizations neither sought special compensation nor placed much stress on identifying and punishing the culpable parties, as did people with hemophilia...
...That remained the advice we were given .. into 1985...
...In Italy and Denmark, insurgent hemophilia rights groups abandoned the practice of insisting on the privacy of people with hemophilia...
...In country after country, newly energized people with hemophilia shattered these cozy arrangements, seizing control from the supposed experts...
...The Canadian Hemophilia Society, in the words of its president, started "crying scandal" on behalf of self-styled "victims," as people with hemophilia publicized their own plight and demanded a state investigation...
...After all the debacle of the 80s, we do not need an organization that cozies up to the corporate decision makers...
...In modern societies, which purport to be able to manage risk, such calamities are not regarded fatalistically, but instead invite a search for causes and culprits...
...The movement has spoken about the price of death but not the need for treatment...
...Variations on these themes have been played out in half a dozen other countries, including Ireland, Germany, and the Netherlands...
...But the very reason the concentrate is so effective, the fact that a single dose is drawn from thousands of donors, is also why it posed potentially grave risks—why the gift of life could also be a poisoned gift...
...In a polis where such groups hold sway, the public interest gets defined as the aggregation of these groups' grievances...
...This isn't necessarily a measure of social justice, however...
...difficult to comprehend how the NHF could have failed to sound an alarm" about hepatitis B. Once SUMMER • 1997 • 67 Hemophilia, Rights, and AIDS AIDS appeared, the bill of particulars noted, "the NHF . advised hemophiliacs not to be alarmed and not to change their treatment methods...
...For that reason, gay activists have pressed for greater public support for AIDS research, and some have schooled themselves in the language of science in order to participate in forums usually dominated by scientists...
...It's an irresistible narrative, and politicians of varying stripes haVe been drawn to the cause like moths to flame...
...In Canada, more than a hundred policy makers have been the focus of a multiyear investigation, conducted by an official commission of inquiry at a cost of more than $14 million (Canadian), and it is anticipated that the commission's report will result in charges of criminal misconduct...
...they were also making a judgment about who was and wasn't deserving...
...Such corporate decisions] should not cause anxiety or changes in treatment programs...
...Because hemophilia sufferers are men, these spokesmen contended, their joining forces with gay groups could be read as confirming the belief that people with hemophilia were homosexual...
...For its part, the Italian Hemophilia Association demanded hospitalization for people with hemophilia apart from other terminally ill AIDS patients, who were mainly gay and intravenous drug users...
...So enraged were these activists that at the criminal trial of a senior health official, police feared that infected syringes would be thrown at the accused...
...On a warm afternoon in the autumn of 1996, a limousine pulled up at the gates of the Bayer AG plant in Berkeley, California, and a handful of young men piled out of the car, megaphones to the ready...
...Out of the nightmare of AIDS a new social movement has emerged...
...Their demands have been expressed in terms of tangible entitlements—financial settlements—as well as symbolic acts of contrition...
...The fact that hemophilia was often confounded in the popular imagination with homosexuality exacerbated the divide...
...One current public health debate concerns whether all blood should be screened, at enormous expense, for the rare and non-fatal virus hepatitis C; another has to do with whether blood found to be contaminated with Creutzfeldt-Jakob (mad cow) disease should be recalled, and recipients of such blood informed—even though there is no evidence that this disease can be transmitted by blood—because there is no way to prove the absence of risk...
...These newly energized groups turned to tactics that, although the staples of other social movements, were anathema to traditionalists...
...In France, the budget for indemnifying people with hemophilia is more than twice the annual outlay for AIDS SUMMER • 1997 69 Hemophilia, Rights, and AIDS prevention (and many times the budget for AIDS research...
...It is...
...A generation later, when the first blood-clotting product, cryoprecipitate, became available, things changed dramatically...
...Across France, posters featured a torch with a flame of letters that spelled out the party's favorite scapegoats—"Socialisme, Immigration, Delinquance, Affairisme"—equating them with S IDA, the French acronym for AIDS...
...Hemophili68 • DISSENT Hemophilia, Rights, and AIDS acs formed an alliance with the ultra-right National Front, which stood to gain politically from the hemophilia sufferers' plight...
...The successes of the hemophilia rights movement have meant help for a handful of people who needed it...
...Who will weather the insult hurled at an American doctor whose professional life had been devoted to the care of people with hemophilia, and suffer being called "the Mengele of the Hemophilia AIDS Holocaust...
...until then, there had been no way to replenish Factor VIII, the protein in blood plasma, absent in people with hemophilia, SUMMER • 1997 • 65 Hemophilia, Rights, and AIDS that helps blood to clot...
...During this initial spate of activism, the principal demand in most of the thirty-three member nations of the World Federation of Hemophilia was that hemophiliacs with AIDS and their families receive financial compensation from the government and/or the drug companies...
...Moreover, "with the exception of persons who were transfused with contaminated blood, only our community has been brought down by AIDS precisely because we followed the advice of our doctors...
...To a remarkable extent, the movement has achieved its goals...
...This public campaign forced the heads of pharmaceutical houses and health officials in Japan to rethink their attitude of cavalier dismissal...
...A few years earlier, they would have praised the drug company for manufacturing Factor VIII, the blood-clotting concentrate that enabled them to lead normal lives, but this lifeline had proved to be the source of HIV contamination...
...Farben, I.G...
...Unlike cryoprecipitate, this blood product could be kept at home without refrigeration, and could be used prophylactically...
...Their anger has been directed at firms like Bayer, which manufactured Factor VIII, as well as at governments, for their supposed failure to warn of the danger...
...Hemophilia activists in France relied on homophobic fears as a reason for maintaining the separation between groups led by gays and those led by people with hemophilia...
...In the United States, individuals exposed to HIV through blood transfusions will not benefit from pending federal legislation, which provides compensation only for people with hemophilia...
...Not just hemophilia rights organizations but social movements generally stress the grievances of a narrowly defined constituency, because that is the easiest way to provide coherence, to gain members, to construct a shared narrative...
...In the aftermath of the hemophilia rights movement, who will risk being known as "Blood Britta," the Danish health minister who, AIDS activists claimed, "wants dead bodies on her table...
...Emphasis added...
...In Holland, usually known for its consensual manner of decision making, a debate over the purity of the blood supply became known as "Bloody Sunday" for its acrimony...
...Hemophilia groups had long been dominated by the medical and pharmaceutical establishments, and consequently reacted cautiously to the news of tainted Factor VIII...
...Commenting in 1983 on one drug company's decision to withdraw a batch of Factor VIII, the U.S...
...In effect we were told by NHF to use [Factor VIII] just as though there were no danger of AIDS...
...But if emotion-laden appeals assume pride of place in democratized policy conversations, rational public officials will become more risk-averse, unwilling to invite the political fallout that comes from taking on those who can take to the television studios...
...Consequently, more than half of those with severe or moderate hemophilia were infected with the deadly virus...
...and even at their own organizations, which allegedly minimized the risk of exposure to HIV...
...The narrative of fault and blame, as well as the focus on the plight of appealing individuals— Kimberly Bergalis in Florida, the sweet-faced teenager allegedly infected with HIV by an irresponsible gay dentist...
...Farben, Zyklon B, Zyklon B"—an unsubtle reference to the lethal gas manufactured by the German pharmaceutical house and used to chilling effect in the Holocaust—"four thousand dead, four thousand dead, four thousand dead...
...A cameraman recorded the scene, preparing "great source tape" for television stations to air...
...They wanted to be entirely normal—to be able, as the director of the French Hemophilia Association said, to climb Mont Blanc...
...The future of the hemophilia rights movement is uncertain...
...While this is good news, there is also another, less noticed and less happy, tale to be told—about the fissioning of the AIDS-infected universe along the fault line of the deserving and the undeserving, the innocent and the guilty...
...This newly energized movement has demanded compensation from drug companies and governments, as well as apologies for wrong-doing and justice in the criminal courts...
...Today we demand justice," exclaimed a mother of two hemophiliac sons, both dead from AIDS, "and shout to the world and to this committee, 'How did you let this happen to us?'" Across the globe, hemophilia rights movements were similarly strident...
...At a meeting with spokesmen for the hemophilia rights group, he bowed deeply in apology, his forehead touching the floor, and this display of physical and psychological vulnerability became the defining moment of the conflict...
...Then, the demonstrators were mainly young gay men, members of ACT-UP, protesting the pricing practices of pharmaceutical houses that made AZT and other drugs unaffordable to many people with AIDS...
...television stations were invited to record the plight of hemophilia sufferers, as a strategy for boosting public support...
...Having achieved much of what it set out to do, the movement has only the power of solidarity, or the possibility of a new threat to the purity of the blood concentrate supply, upon which to pitch its appeal...
...at their doctors, who, they asserted, misled them...
...In that success are to be found the seeds of its possible demise...
...Although this mysterious new disease, identified in 1981, was originally believed to affect only gay men (the U.S...
...During the late 1980s and early 1990s, similar "zaps" were regularly launched by AIDS activists against drug companies...
...The NHF had refused to seek financial compensation, believing that such a move would be dangerous because socially divisive, "an ideological throwback to Elizabethan Poor Laws, with notions of 'deserved' and undeserved populations...
...There was only the remotest possibility that tainted blood was used, these spokespersons averred, and that threat was outweighed by the risks of diminished mobility for people with hemophilia denied access to Factor VIII concentrate...
...In distinguishing hemophilia sufferers from other people with AIDS, and claiming they were uniquely entitled to compensation, the activists were doing more than practicing interest group politics...
...Even Switzerland, home of the International Red Cross, widely believed to have set the gold standard for purity of the blood supply, has had its own blood scandal...
...they shouted...
...Hemophilia/HIV Peer Association declared in 1991, because of the "commercially driven practices of certain large pharmaceutical corporations...
...On World AIDS Day 1995, 1,400 students gathered at Waseda University...
...In Japan, lawsuits and street theater were the twin prongs of the hemophilia rights campaign...
...blood supply system, since that commission's mandate was expressly limited to hemophilia sufferers...
...In the United States, the insurgent Committee of 10,000 issued a scathing report, "The Trail of AIDS in the Hemophilia Community," drawn from documents discovered in legal proceedings, which summarized "evidence that demands a verdict" against, among others, the established hemophilia organization...
...Subsequently, a high-ranking Japanese government official has been sentenced to prison for his role in the blood products scandal, and officials at companies that manufacture blood products stand accused of falsifying data...
...These quarrels reflected more profound differences in how the gay and hemophilia movements responded to the AIDS epidemic...
...The possible dangers became evident soon after the concentrate went on the market, when substantial quantities were found to be contaminated with hepatitis B. Then, a decade later, came the advent of AIDS...
...As new information has continued to surface about what was known about AIDS and blood, when it was known, and by whom, the sense of outrage has heightened among activists...
...Pharmaceutical houses were accused of putting hemophilia sufferers' lives at risk by knowingly distributing tainted batches of Factor VIII...
...When hemophilia groups described themselves as "innocent victims," they invited hostility toward other people with AIDS, especially homosexuals and intravenous drug users, who could not so readily occupy the moral high ground...
...At the outset of the epidemic, it was rumored that AIDS was a CIA plot to kill off homosexuals, but that claim was quickly dismissed as paranoid...
...In a memo to member national organizations, it observed that "the public has to be convinced that haemophiliacs are particularly eligible for compensation, especially with respect to psychic and social aspects...
...In Japan, a health minister seized upon their grievance to clean house in his bureaucracy, so boosting his own political career...
...The first scientific advance came in 1941, with the separation of plasma from whole blood, which meant that people with hemophilia could be treated without the many complications of ordinary blood transfusions...
...Despite all the criticisms hemophiliacs have leveled against their doctors, they remain dependent on those physicians, and this reality also limits the potential for mobilization...
...Under those circumstances, the foundation's reassurances were acts of betrayal, the manifesto continued...
...these efforts, even as it tiptoed through the social minefield of guilt and innocence...
...A few months later, it urged that governments recognize "the uniquely tragic position of people with haemophilia who have become HIV-seropositive through the use of medically indicated blood products...
...I.G...
...Yet instead of switching back to cryoprecipitate, with its far lower risk of contamination, most people with hemophilia continued, fatefully as it turned out, to rely on the concentrate until the middle of the 1980s...
...At the outset of the epidemic, the French Hemophilia Association had adopted a policy of quiet diplomacy and backdoor overtures to 66 • DISSENT Hemophilia, Rights, and AIDS government, in order "not to have hemophiliacs talked about" and not "to accuse either doctors or the State...
...At the international level, so substantial was the dependency of the medical specialists on their pharmaceutical patrons that until its 1994 conference, the World Federation of Hemophilia forbade any public criticism of the drug companies...
...Hemophilia is an inherited disease that strikes only males, and young men in particular had a hard time coming to terms with their genetic inheritance...
...Emphasis added...
...Moral tests would not be imposed before assistance was forthcoming...
...Identity politics of this kind is inherently divisive, for it thrives when a particular worldview, a tale of blame, gains popular support, even when this means rejecting rival claims for justice...
...Those firms had failed to counter the earlier threat of hepatitis B. Had they done so, "they would have prevented the transmission of HIV...
...It revolutionized the lives of hemophilia sufferers, as school and work became taken-for-granted activities...
...A tragic accident, the pharmaceutical houses called it, but to many hemophilia activists these casualties were the inevitable result of decisions driven by corporate greed...
...For their part, public health officials were charged with criminal indifference to the plight of people with hemophilia...
...This essay draws on materials collected as part of a thirteennation study of AIDS and the blood supply, supported by the Toyota Foundation and the Rockefeller Foundation, in which the author is a participant...
...Historically, people with hemophilia were united only in stigma and suffering...
...W(h)ither Activism...
...The prevailing calculus of support, which invites distinctions between the deserving and the undeserving in the delivery of assistance, signals prudent public health officials how to respond to the next health crisis, and the one after that...
...They insisted, as well, on an apology for the infliction of needless suffering and death...
...Though the focus of the 1996 protest remained AIDS, the protesters were hemophiliacs, not homosexuals...
...In France, which has a centuries-long tradition of venerating its blood donors, the revelation that, for financial reasons, batches of Factor VIII (and whole blood) had been used despite knowledge of their likely impurity, led to an alliance of rebellious hemophiliacs, journalists, and lawyers...
...The professionally run organizations that spoke on behalf of people with hemophilia were chiefly concerned about maintaining the widespread availability of Factor VIII concentrate, and so were inclined to minimize the AIDS risk...
...Emphasis added...
...We are here to take your name away...
...Innocent Victims—and Everyone Else Across the globe, the story of AIDS and people with hemophilia is told the same way: a tiny and vulnerable group, born with a medical condition that it has struggled to overcome with the help of modern science, guilty of nothing except faith in its doctors, is decimated by the very forces that it regarded as its saviors...
...One dose of cryoprecipitate contains Factor VIII drawn from five to fifteen donors, not just one, and the treatment is faster, infinitely less painful, and far more effective than the administration of whole plasma...
...At the 1992 NHF convention, protesters wearing death masks confronted "the corporate mass murderers...
...Hemo-homo," a common schoolyard taunt in many nations, graphically expresses this popularly conceived connection...
...One attorney explained the dual strategy: "We have learned on other occasions that rights will not be bestowed from above if we are silent...
...Centers for Disease Control initially referred to this condition as GRID, gay-related immune deficiency), within a year the first cases of blood-borne transmission were being reported...
...It conceives of justice as being therapeutic, but justice is a discipline, not a cure...
...Perhaps because, unlike gays, they already expected to receive care, they concentrated their energies on the misdeeds of the blood products industry rather than on AIDS treatments or vaccines...
...Most people with AIDS, of course, did not contract the disease from factor concentrate, but rather through sex or dirty needles shared by drug users...
...National Hemophilia Foundation declared: "It is not the role of the NHF to judge the appopriateness of corporate decisions made by individual pharmaceutical companies...
...In 1995, Green Cross, the country's primary supplier of blood products, had patronizingly said that "[vi]e feel pity for the patients rather than being sorry for them...
...an activist splinter group, the French Hemophilia Association of Poly-Transfused Persons, brought charges against the blood banks and the French Hemophilia Association as well...
...The new generation of activists demanded compensation—which by this time had been provided by every other postindustrial democracy—not only as financial relief but also as "a partial payment for wrongs that had been done...
...and, since many nations relied on U.S...
...Factor VIII concentrate, which first came on the market in 1970, held out the hope of total liberation...
...Less than a year later, though, amid a widening blood scandal, the Green Cross president reversed his position...
...We—the alienated— do not identify with the hemophilia institutions...
...Jean-Marie Le Pen's party nominated a hemophiliac candidate for Parliament...
...Even where innocence and its shadow weren't so sharply contrasted, gays and hemophilia sufferers often found themselves at odds...
...two weeks later, rallies were held in eight Japanese cities, as two thousand demonstrators massed at Tokyo's Ministry of Health and Welfare...
...The gay AIDS message has emphasized empowerment rather than victimhood (tellingly, people with AIDS, or people living with AIDS, not AIDS victims, is the preferred expression), as well as the need for the AIDS-infected to become involved in influencing policy that directly affects their lives...
...The international federation nurtured...
...For gays, there was little support for conspiracy theories...
...AIDS wasn't a metaphor, just a virus...
...Doctors and people with hemophilia in Denmark split over the propriety of a confrontationist strategy, and the fact that the chairman of the Danish association's medical committee was also a blood products manufacturer became a point of controversy...
...Hemophilia groups, by contrast, have mainly presented themselves as victims entitled to compensation...
...Their argument from innocence made it easier for public officials to focus on these favored groups, especially people with hemophilia and children with AIDS (who have also received disproportionate government aid), while paying less attention to the vast majority of AIDS cases, which are not blood-linked...
...These activists condemned the National Hemophilia Foundation in equally strong language...
...Over a period of months, sometimes years, those companies failed to test the blood they used to manufacture concentrate in order to determine whether it was infected with HIV, and failed to switch to heat-treated Factor VIII, a process that destroys HIV, until their stocks of the non-heat-treated product had been used up...
...l'accuse' By the mid-1980s, as the death toll mounted among people with hemophilia exposed to the virus through blood transfusions and Factor VIII concentrate, the victims' anger crescendoed...
...It' solidarity and fearfulness prove to be insufficient glue, this new social movement will have exhausted itself in the battle over AIDS-tainted blood...
...Such participation has been conceived as altering the curve of the future: promoting effective treatment, a vaccine, and eventually a cure for the disease...
...70 • DISSENT...
...This was only modest progress, however, because the plasma treatment was painful and protracted, keeping many hemophiliacs from holding steady jobs and obliging them to depend on welfare...
...Meanwhile, equally valid claims are ignored because there's no group prepared to press them...
...Nowhere was the drumbeat of betrayal and evil-doing heard more loudly than in the United States...
...suppliers for blood-clotting products, similar calamities were reported not just in the United States but across the globe...
...In the midst of the AIDS devastation, people with hemophilia have claimed a degree of control over their own lives, and in so doing, they have obliged governments and transnational corporations to take them very seriously...
...Nor were these transfusees invited to appear before the national commission that reviewed the operation of the U.S...
...This was a major advance—still, many hemophilia sufferers hoped for more than an approximation of normality...
...A "genocide" was occurring, the newly formed U.S...
...Yet in another kind of society—one less committed to the justice of Elizabethan Poor Laws, more inclined to shared responsibility—the fact that a person is seriously ill would be reason enough to deliver such help...
...A longer and substantially different version of this essay will appear in a volume published under the auspices of that project...
...In such instances, the politically safe decision is to insist on zero risk— even if this means expenditures that would not withstand cost/benefit scrutiny, and even as far larger risks that won't be captured in vivid policy dramas are ignored...
...In arguing that hemophilia sufferers preferred the risk, presumably minute, of being exposed to contaminated blood to the loss of access to Factor VIII concentrate, the specialists made risk calculations on behalf of their clients— calculations that turned out to be terribly wrong...
Vol. 44 • July 1997 • No. 3
