Feature

By JoSelle Vanderhooft

In 2002, Brian Lykins, a 23-year-old Minnesota man, died after having what was otherwise normal knee surgery. And had the Center for Disease Control and Prevention’s investigation not discovered the bacterium clostridium sordelli in donated cartilage used in Lykins’ surgery, the young man’s death might never have made national news.

Also, it might never have prompted the Food and Drug Administration to speed up the process of setting new rules for tissue donor eligibility, something it had been preparing to do since 1997.

In May, the FDA established new rules requiring reproductive tissues like semen and ova to be tested for such diseases as HIV, hepatitis B and C, Creutzfeldt-Jakob disease and new diseases like west nile virus and SARS — diseases other tissues, such as musculoskeletal, eye and skin tissues, are tested for.

But the law also established new criteria for who can donate tissue in the first place. Under the new rules, intravenous drug users and men who have had sex with other men in the last five years cannot legally be tissue donors — due, presumably, to this population’s statistically high risk for contracting HIV.

That’s when the controversy started.

Lambda Legal executive director Kevin Cathcart objected to the new policy, particularly its exclusion of gay men as sperm donors, saying it was based more on bigotry than on scientific reasoning.

“HIV affects every part of our nation’s population, and the FDA needs to realize that fact and stop treating gay men as the only people who contract HIV,” a May 21 Associated Press article quoted him as saying.

Likewise, National Gay and Lesbian Task Force executive director Matt Foreman called the regulations “misplaced” in a May 30 article in the trade publication Transplant News, saying that HIV tests are faster and more effective today then they have been in the past.

Nonetheless, Jesse Goodman, director of the FDA’s Center for Biologics Evaluation and Research program, said that current HIV tests were not 100-percent accurate. And as such, precautions still needed to be taken.

“While there have been tremendous improvements in laboratory testing, they’re not foolproof,” said Goodman. “For that reason, we routinely exclude populations where sound scientific evidence shows that there could be a risk to the person receiving the donation.”

Only time and further research will determine whether or not these new rules hold water scientifically. In the meantime, the FDA’s new law may lead gay men to think they shouldn’t bother checking “yes” for organ and tissue donation when filling out their driver’s license applications.

According to Ben Deiterle, public relations specialist at Intermountain Donor Services (IDS) and an openly gay man, gay men still have every reason to say “yes” to being donors because the new laws only prevent them from donating tissue — which, in most cases, the FDA sees as less essential to living than organs.

“Organ donation and tissue donation are two different categories,” he explained. “Organs are necessary for living whereas tissues are optional because in most cases they improve life rather than saving a life. So, [donor services] are going to find any way they can, if possible, to transplant an organ to a recipient because in most cases the recipient will die eventually if she or he doesn’t get that organ.”

“It gets back to this: Nobody has died yet waiting for tissues such as a tendon or a cornea, so why take chances?” said Alex McDonald, director of public education at IDS. “With organs we’re a little more willing to take the chance, especially if it’s a very dire circumstance.”

According to Dean Porcelli, one of IDS’s six organ coordinators, all organ donors and their organs are subject to extensive background checks in order to determine organ viability.

Once organ coordinators have determined that the donor’s name appears in the Utah donor registry, coordinators begin testing his or her organs for function, suitability for transportation, and communicable diseases. At this time, coordinators also ask the donor’s family and friends to help them piece together the donor’s social and medical history.

If the fact that the donor was gay comes up during this phase, Porcelli said that it isn’t something that would rule the donor out “automatically.”

“We simply make the potential recipient centers aware of this and then we let them make their decision [whether or not to use the organ] based on this,” he said.

“If those organs are healthy and that person wanted to be a donor, we’re going to want to recover those organs so we can save lives,” added Deiterle.

Additionally, Deiterle said that gay men still have every reason to say “yes” to being donors because the new policies regarding tissue donation are not set in stone. “In the case of tissue donation, these policies are constantly being updated,” he said. “So while men who have had sex with men in the last five years are excluded right now, in a year from now that could change. As tests become more sophisticated, they may be able to determine the viability of those donated tissues in a more accurate way so they can be used.”

“There are obviously monogamous gay couples or people who don’t have diseases who are sexually active,” he continued. “We would hate to exclude someone who wanted to save another life when we have the technology to test those tissues to determine whether or not they were healthy.”

Because donation centers receive thousands of requests for organ and tissue transplants each year, Deiterle said organ and tissue banks are “continually looking for ways to be inclusive, not exclusive.”

“Quite honestly, I don’t think nationally there’s a lot of resistance to including the GLBT community [as tissue donors] other than safety issues,” he said. “We have to follow what the government sets as guidelines because we’re a government-designated agency and we want to be safe, but from our own personal standpoint we’re very progressive in that if the donor has viable organs or tissues for transplant, we want to use those. That’s what we’re in business to do.”

Issues of safety and government regulation aside, some IDS workers such as J. Noel Kvale, IDS tissue recovery coordinator and an openly gay man, said the FDA’s new rules seem out of touch with the realities of tissue donation.

“As a professional, I have to accept these policies, but in what I do I see higher risk factors in sexually straight people than I have in gay male [donors], or gay people for that matter,” he said.

“Our biggest concern is risk factors that would potentially make the tissue infectious,” he continued. “For example, we have found with cocaine use and drug use that the incidince of certain types of hepatitis and STDs go up, so it’s a risk factor we aren’t willing to accept. I see far higher incidents of deferrals based on IV drug use and STD sexual practices in sexually straight [donors], and more people being deterred based on drug use and issues other than sexuality. It’s not their sexuality that’s a factor. It’s the choices they make as individuals with drug use and other aspects of their lives.”

Although sexuality may not ultimately be the strongest bar to a gay man’s wish to donate tissue, the FDA’s rules still stand — at least, for now. Even so, the IDS workers said that the gay community can do a variety of things to start changing this reality.

“I think, first and foremost, every GLBT person in Utah should go to the Utah donor registry and sign up as a tissue and organ donor,” Deiterle said. “First off, if you’re not on the donor registry then what you desire to do as far as being a donor is not known.”

“Secondly, I think there needs to be more public education like what we’re doing in our community to let people know that, number one, any gay or lesbian person can be an organ donor, even if there are limitations for gay men donating tissues right now.”

He and McDonald also said gays and lesbians should write letters to their representatives in Congress and to newspaper editors in order to jumpstart public discussion on the issue of gay men donating tissue.

Finally, Kvale suggested reminding people about the importance of tissue donation to families and to society at large.

“Families really benefit a lot from the donation process,” he said. “It helps with grieving, bereavement. And I think families really benefit from the whole process. I think if we were able to offer the things we offer to one more segment of the population, being the families of gay men who have had sex in the last five years, I would feel even better. Because, as a gay man, I’d like to be able to help the part of the population that I am included in. I know my family would be supportive of a donation if it were something available to me.”

“I often get questions such as, ‘is this really going to make a difference?’”, he added. “Any tissue donation, if the tissues pass serological testing, can benefit anywhere from ten to seventy-five people — perhaps more. This makes a family feel like their family member is constantly living on.”