As a liberal-minded person, Kathy Gerus-Darbison never wanted to stand in the way of equal treatment for gays. As a college professor, she certainly never meant to end up on the wrong side of what many experts consider a settled question of science.
But then, she never thought she would watch in helpless horror as her husband, a hemophiliac, received contaminated blood products and ultimately died of AIDS, growing so desperate he begged doctors to radiate his brain in hopes of gaining a little more time with his family. She contracted HIV from him before she knew he was sick; now she has AIDS and worries about her own survival.
FOR THE RECORD:
HIV transmission: An article in the April 4 Section A about the debate surrounding a proposal to relax a ban on the donation of blood products by gay men stated that, according to federal health officials, HIV is known to have been transmitted via blood products nine times from 1994 through 2007, the last year for which data are available. Although data were collected through 2007, the last known case of such transmission occurred in 2002, a year in which there were more than 13.5 million transfusions in the U.S., according to the American Assn. of Blood Banks and the Centers for Disease Control and Prevention. —
And should the memory of those experiences fade, there are the searing words of her young daughter: “I wish I had HIV too, so I could die with you guys.”
Today, Gerus-Darbison is caught in a trap set by history -- forced by terrible experiences into taking a position that challenges some of her core beliefs.
Her plight and the public policy question at the heart of it have attracted little public notice. But the issue has turned Gerus-Darbison and others in the hemophilia community into an army of Davids standing in the path of political Goliaths -- America’s highly organized gay rights community, the Red Cross, the American Medical Assn. and others.
At issue is a quarter-century-old ban on blood donations from men who have sex with other men. The ban was imposed to contain the spread of HIV, but gay-rights activists say scientific advances have made HIV contamination of the blood supply next to impossible. Maintaining the ban unfairly stigmatizes gay men, they say.
Many medical experts agree. Now the Food and Drug Administration is considering relaxation of the rule.
Gerus-Darbison, who is co-chair of a blood-safety committee for the National Hemophilia Foundation and served on President Clinton’s Advisory Council on HIV/AIDS, tries to understand. But her experience -- and those of many others in the hemophilia community -- tells her to resist.
Between 10,000 and 15,000 of the 25,000 Americans with severe hemophilia -- a hereditary disorder that disrupts blood clotting and often requires large-scale transfusions -- are believed to have been infected with HIV via tainted blood products in the late 1970s and early 1980s, said James Curran, who at the time headed the first AIDS task force at the Centers for Disease Control and Prevention.
Fewer than 2,000 are still alive, according to the CDC.
“They lost essentially a generation of people,” said Curran, dean of the School of Public Health at Emory University. “This was something that was burnished in their DNA. For hemophiliacs, this was a holocaust.”
Set against the feelings of the hemophilia community is a rising chorus of calls for change.
In 2006, the American Red Cross and two other blood-collection associations, whose members supply nearly all of the country’s blood, recommended scrapping what amounts to a lifetime ban on donations by most gay men in favor of restrictions like those imposed on heterosexuals who engage in risky behavior.
Two years later, the American Medical Assn. also said the time was right to ease the ban.
The Human Rights Campaign and other gay advocacy groups have spoken up too, and last month, 18 U.S. senators called the ban “medically and scientifically unsound” and asked the FDA to consider revising it.
Days later, the FDA announced it would review the policy with an eye to “pursuing alternative strategies that maintain blood safety.”
The discussion of blood-donation policy turns on item No. 34 on the standard 48-question history form for male donors. It asks: from 1977 to the present, “have you had sexual contact with another male, even once?”
Answer “yes” and you are forever barred from giving blood.
“It paints the community with a very broad brush,” said Kevin Jones, deputy director of Out and Equal Workplace Advocates, a San Francisco-based nonprofit that promotes equal treatment for gay, lesbian and transgender workers.
Jones said he’s HIV-negative and has been in a monogamous relationship for 14 years, but still is barred from donating blood. “I’m no more at risk than an opposite-sex couple that’s in the same situation I’m in,” he said.
Because blood drives are frequently held in schools and businesses, the donation policy can stigmatize gay men by preventing them from participating in an activity often used to build camaraderie and teamwork, said Sean Cahill, a managing director at the Gay Men’s Health Crisis of New York.
The current ban “promotes the idea that gay men are a health threat,” Cahill said.
According to the CDC, HIV is known to have been transmitted via blood products nine times from 1994 through 2002, when the last recorded case of such transmission occurred. That year there were more than 13.5 million transfusions in the U.S., according to data from the American Assn. of Blood Banks.
Mathematical models suggest there should be three or four cases of HIV through blood transfusions per year, but “clearly that’s not happening. . . . We think the science would support a revisiting of the permanent deferral. But it’s up to the [FDA],” said Dr. James AuBuchon, president-elect of the blood bank association.
For her part, Gerus-Darbison, a 52-year-old sociology professor at a community college in Auburn Hills, Mich., considers herself a staunch supporter of gay rights. And she and other supporters of the current ban acknowledge that it can be prejudicial.
“Donor-deferral measures by their nature and design are discriminatory. We don’t dispute that,” said Mark Skinner, president of the World Federation of Hemophilia. But gay and bisexual men continue to have the highest numbers of new HIV infections, Skinner said, as well as high rates of infection for other sexually transmitted diseases.
Skinner worries that altering standards will make it harder to detect emerging threats.
“It’s not just about HIV,” he said. “We don’t know what the next pathogen is.”
Skinner, 49, a hemophiliac who was infected with HIV via tainted blood products, said he wasn’t necessarily opposed to making it easier for gay men to give blood, but added: “Don’t make the change until you know for certain” there’s no additional risk.
And Gerus-Darbison, while willing to consider modification of the present ban, never forgets that the original problem essentially sprang from what the medical and scientific communities didn’t know.
“This was an incredible tragedy. With that history in mind, it’s very understandable that members of the hemophiliac community are extremely cautious,” said Adam Cuker, a hematologist at the University of Pennsylvania Health System.
That’s how Gerus-Darbison sees it. Recalling her daughter’s plaintive wish to become infected with AIDS so that she would not outlive her parents, Gerus-Darbison said, “No parent wants to hear that.”
“This is our job,” she said, “to be watchdogs of the nation’s blood supply. This cannot be allowed to happen again.”