A sad episode in the HIV epidemic offers lessons for Penn State
by Harold Pollack, November 19, 2011
we asked them how many dead people it would take before they believed us about the blood supply. we’d come back then.
they wanted to knowhow the political untouchables got involved in this.
I don’t have much specifically to add about the sad pedophilia scandal now unfolding in Penn State. Don Taylor and I did a bloggingheads recently that touched on the economic exploitation and hypocrisy in college sports. What happened at Penn State is a much more profound failure. I don’t believe it’s fair or wise to conflate this different order of things. Yet this scandal does have some instructive parallels to another scandal. I looked back at something I wrote years ago, and saw more than a few parallels.
In the early days of the HIV epidemic, the American blood supply became tainted with infected blood and blood products. By 1985, the problem was largely addressed through the development of reliable testing. By then, though, about ten thousand hemophiliacs, including 90 percent of Americans with severe hemophilia, were infected. Twelve thousand other Americans were infected through whole blood transfusions or other blood products. It was the most dramatic institutional failure in the history of this terrible epidemic.
Most hemophiliacs were infected through antihemophiliac factor concentrate, or AHF. Because AHF is made from pooled plasma from hundreds or thousands of donors, use of these products rapidly produced endemic HIV prevalence. In shattering so many lives, the resulting outbreak shattered the credibility of the National Hemophilia Foundation (NHF). Patients relied on NHF for basic health information. Yet NHF had a very close relationship with the blood supply industry, which likely influenced the organization’s medical advice to patients during the HIV epidemic’s critical early days. The scandal shattered the reputation of the Food and Drug Administration (FDA), which had allowed the blood industry essentially to police itself. It shattered the reputation of the Red Cross, one of whose officials in 1983 expressed the unfortunate complaint that “CDC is likely to continue to play up AIDS.”
You might think the United States responded worse than other countries to this problem. Not really. As described in the useful edited volume Blood feuds: AIDS, blood, and the politics of medical disaster, the medical and public health systems failed to effectively respond in just about every wealthy country. Blood suppliers, physicians, and even hemophilia advocacy organizations falsely reassured patients about blood safety, long after there was reason to know better. Public health authorities were not consulted or were over-ruled when questions of outbreak investigation and control arose. When no reliable HIV test existed, authorities failed to effectively curtail donation by sexually active gay men, prison inmates, and injection drug users.
In a surprising number of countries, organizations holding large and costly inventories yielded to “the temptation to use up existing stocks” of contaminated blood products. When these products were called into serious question, blood suppliers were often incompetent, failing to warn patients or medical providers about the deadly vials of already-distributed products sitting in people’s refrigerators. French and Japanese firms used their political leverage to exclude safer products manufactured by American competitors or to drag their feet regarding needed safety measures. People were prosecuted.
Under the best of circumstances, tens of thousands of people would have died of HIV through tainted blood. You can’t prevent every catastrophe. Yet the economic, political, and organizational environment made things much worse than they needed to be. And here’s where the parallels to Penn State are instructive.
The Institute of Medicine’s 1995 analysis of these events, HIV and the blood supply: An analysis of crisis decisionmaking, offers the most judicious (and thus especially damning) analysis of the clinical and organizational failures that permitted many needless infections. Until the 1980s, blood policies fell within the purview of a highly-respected and insular group of blood suppliers, medical providers, and researchers who operated with little effective oversight. In the immediate aftermath of the Swine flu debacle, public health authorities were at a particularly low ebb in their self-confidence, prestige, and influence, particularly when pitted against an industry which had developed such successful therapies to treat blood disorders. In part due to misguided political opposition from the gay community, the FDA rejected prescient calls from CDC researchers to require surrogate testing for hepatitis B, a condition known to be present in most AIDS patients.
Noted the “failure of leadership” that underlay specific poor decisions, the IOM concluded: “When confronted with a range of options… blood bank officials and federal authorities consistently chose the least aggressive option that was justifiable.” One could hardly write a more accurate sentence regarding several organization’s responses to recent sex scandals.
The IOM also noted the dependence and conflicts of interest—and equally important, the cognitive capture—that occurred when the FDA and the National Hemophilia Foundation got too close to the blood and plasma industries, and to the community of hematologists and other medical providers. Hemophiliacs and their advocates had strong reasons to admire and trust, sometimes too much, the developers and manufacturers of these therapies. At times, this produced failures of judgment. Nonprofit organizations responded with lethargy and bureaucratic timidity. Protected by “shield” laws and by a high threshold of legal negligence, for-profit firms failed to implement safety innovations.
Failure of imagination played a large role, too. Between 1981 and 1983 when bad decisions were made, few hemophiliacs were in AIDS treatment. There was no real way to measure broader HIV prevalence. Meanwhile, thousands of people enjoyed better lives because of AHF. For many medical providers, physicians, and regulators, it was literally inconceivable that such valuable therapies harbored a deadly and silent, as-yet undetectable infectious agent.
Need I spell out the parallels with pedophilia here, too? Sometimes it’s equally unbelievable to think that an otherwise apparently good and decent colleague or acquaintance harbors a secret sickness that led him to commit a sexual atrocity. Yet that’s precisely what sometimes occurs.
In the blood supply story, negligence and grossly unethical behavior proved surprisingly widespread in many countries. Such misconduct was often committed by physicians and by capable officials who, after the fact, could give no comprehensible account of basic ethical failures. Many of these ethical violations were committed by physicians who were, by all accounts, highly effective and caring in their direct clinical care. Yet they behaved differently they assumed less personal institutional roles: running agencies, serving on government advisory panels.
Does this sound familiar?
The blood supply failure underscores the value of rigorous, transparent policy analysis and public accountability. The most admirable and capable organizations cannot police themselves. They cannot always escape the influence of parochial incentives and perspectives. Good and strong men and women fall short when confronted with difficult moral tests. The Red Cross, the Catholic Church, or Penn State football may command sufficient legitimacy to be granted remarkable freedom from outside regulation and scrutiny. For these very reasons, when such organizations fall short, their prestige and authority give way to an explosive sense of public betrayal.
The errors of the past cannot be undone. One can still assist the victims. One can transparently relate what actually happened. One can bolster specific policies and procedures. Wrongdoers and those who were negligent can be held to account.
But something more is needed, too. Eric Feldman vividly describes a public apology by the leader of Japan’s Green Cross, whose failures had contributed to many needless AIDS deaths:
Kawano got down on his hands and knees, and bowed so deeply that his forehead touched the floor. It was the defining moment of the conflict: a display of physical and psychological vulnerability from the president of Green Cross, a company that had its start in blood banking, dominated the domestic pharmaceutical industry, exerted influence on government policy, and was accused of infecting thousands of the most vulnerable Japanese with a fatal disease.
Many practical measures were taken, too. Yet this dramatic act of public contrition was especially important. Michael Tomasky has suggested that Penn State cancel the remainder of its football season. That painful but wise step would be in keeping with Mr. Kawano’s good example.