(Plain Press, April 2011) On February 24, the Capitol Theater in the Detroit Shoreway neighborhood became a forum for the presentation the film Bad Blood: A Cautionary Tale, which describes how 70% of the hemophiliac patients in the United States were infected with HIV and hepatitis viruses as a result of a failure to protect the nation’s blood supply from contamination by viruses.
Patients who have hemophilia, their family members and health care providers from the local medical community made up the bulk of the crowd of 130 people attending the film and follow-up discussion panel.
Hemophilia is a genetic blood clotting disorder that is characterized by the blood’s lack of ability to clot. Before the 1960s, patients with hemophilia suffered from severe crippling and often death. The discovery of a revolutionary new treatment, factor concentrates, changed hemophilia from a fatal disease to a chronic condition allowing patients to lead nearly normal lives.
According to information provided on the film’s website, badblooddocumentary.com, Factor concentrates, used to treat hemophilia, were derived from human blood, processed, bottled and offered for sale to patients who could inject the factor themselves, at home. The website notes “The ‘miracle’ product was considered so beneficial that it was approved by the Food and Drug Administration (FDA) despite known risks of viral contamination, including the near-certainty of infection with hepatitis – and despite the fact that the process by which it was made, the pooling of blood from thousands of donors, was otherwise outlawed. Because of its manufacturing process, each dose of Factor concentrate was made by pooling 60,000 individual blood donations, opening these vulnerable patients to an enormous contamination risk. At the time pharmaceutical companies, government regulators and even doctors considered hepatitis and ‘acceptable risk’ for these patients. The patients themselves were rarely warned.”
“In the early 1980s, a deadly, unknown virus began to affect gay, urban men – and quickly spread to the hemophilia community, raising concern that the virus was in the nations’ blood supply. Yet even as HIV was identified, hemophiliacs dependent on multiple doses of Factor concentrate were advised by their doctors and advocacy group to keep using them. By the time the medication was pulled from the market in 1985, 10,000 hemophiliacs had been infected with HIV and 15,000 with hepatitis C, causing the worst medical disaster in U.S. history.”
The documentary Bad Blood: A Cautionary Tale, sponsored by the Northern Ohio Hemophilia Foundation, reminded the 130 viewers present at the Capital Theater of how things can go terribly wrong when government regulators fail to do their job and economic concerns of pharmaceutical companies are given precedence over the health and well being of patients. The film, produced and directed by Marilyn Ness, “brings together patients, doctors, drug manufacturers and government regulators to recollect how the worst medical disaster in U.S. history was allowed to occur and cautions us to remember and remain vigilant”
The aim of Bad Blood: A Cautionary Tale, says Ness, is to tell the story through the eyes of family members and survivors of “how a ‘miracle’ treatment for hemophilia became an agent of death for 10,000 Americans.” The film examines how economics trumped science, and how the pharmaceutical industry, scientists, government regulators, and medical personnel failed to use existing science to prevent this disaster.
Cleveland’s own, Donna E. Shalala, former Secretary of Health and Human Services, is quoted on the film’s website saying, “ A haunting film. Our entire public health system failed the hemophiliac community. It is unconscionable when we had the science, we failed to protect our fellow citizens.”
The film documents how the hemophilia community demanded stricter control over the nations blood supply, which resulted in government reform and has led to a safer blood supply. The film reminds the audience of the hysteria and prejudice that surrounded the AIDS epidemic in the United States. It depicts some tragic events involving community ostracizing and abuse of children with hemophilia who contracted HIV, which led to a groundbreaking lawsuit. Ness notes on the film’s website that there is still need for vigilance today in monitoring the pharmaceutical industry, as is evident in the controversy over the FDA approved drugs Vioxx and Avandia whose dangers became evident only after they had already been on the market.
The filmmakers and members of the panel engaged the audience to ask how to prevent similar disasters in the future. There was no charge for admission to the film. Filmgoers were asked to make a freewill offering.
The panel after the film included a nurse from the Hemophilia Treatment Center at University Hospital, a representative from a pharmaceutical company and Marian Sears Hunter, editor of the film. The discussion noted how the efforts of the hemophilia community resulted in stronger safeguards. The discussion also focused on how filmmakers were able to blend interviews with survivors and those involved in the effort to change the regulation of the blood supply with actual footage from the time of the crisis.