In the spirit of “never forget,” a documentary about how thousands of American hemophiliacs became infected with the emerging AIDS virus is being released publicly Wednesday in honor of World AIDS Day.
During the 1980s, as children with hemophilia mysteriously fell ill, public health officials realized that the deadly AIDS virus was being transmitted by a blood product used to manage the children’s rare blood-clotting disease.
That groundbreaking discovery “became the pivotal turning point in all HIV/AIDS prevention, treatment and research efforts,” said Marilyn Ness, director and producer of “Bad Blood: A Cautionary Tale.”
However, due to ignorance, bureaucratic dithering and corporate expediency, about 90 percent of hemophiliacs became infected with HIV and 100 percent became infected with Hepatitis C. This was “the worst medical disaster in U.S. history,” Ms. Ness said.
More than half of the HIV-infected hemophiliacs, including Ryan White and Ricky Ray, died of AIDS.
This past summer, the issue of blood safety and donor policy regarding men who have sex with men (MSM) became a hot topic again.
Currently, men who have had sex with a man, even once since 1977, are permanently deferred from donating blood. (Lesbians are free to donate as long as they are not in other deferred categories.)
Gay-rights groups have long protested this lifetime ban on MSM, saying it perpetuates the stereotype that gay men are a threat to public health. This year, Sen. John Kerry, Massachusetts Democrat, and more than 40 members of Congress asked the Food and Drug Administration to reconsider this donor policy.
In June, a federal panel met to consider changing the MSM policy. They agreed in a 9-6 vote to keep the current policy, but agreed to conduct research to “create a road map forward” for future change.
“Blood safety is not a one-time event,” said Mark Skinner, president of the World Federation of Hemophilia, who personally lives with severe hemophilia and with HIV and hepatitis infections derived from contaminated blood transfusions.
“Today, the American blood supply is as safe as it’s ever been,” but, as “Bad Blood” shows, the nation needs to have “continual vigilance - we should not forget or become complacent.”
The tricky issue is to balance blood safety - especially in light of concerns about blood-borne diseases like dengue fever or a retrovirus like XMRV, which seems to be linked to chronic fatigue syndrome - with donor policies, which necessarily discriminate against people based on medical conditions, travel histories and personal behavior.
Donor policies should be based on solid science, said Mr. Skinner. With open discussions and good research, the result should be that “we all will be safer, and we will be addressing risks more equitably, whether in the heterosexual or MSM population.”
For example, he said, one important research question is to find out what is happening in countries where MSM are permitted to donate blood if they have abstained from sex with males for five or 10 years.
HIV transmission by blood transfusion is now extremely rare in the United States - it occurs at a frequency of 1 per 1.5 million blood donations.