Albert Soto, 51, passed away after suffering what was called "a massive stroke" by his nephew, Anthony Bernal, on Thanksgiving morning. Bernal said his uncle worked extensively with "underserved, underrepresented communities across the board." Soto was director of artworks with the Tucson-Pima Arts Council and gave his time to the League of Latin American Voters, Planned Parenthood, Wingspan and other organizations.
"Albert was one of those people who kind of lived politics actively," Bernal said. "I remember him and my mom talking, and my mom said, 'I would give you whatever organ you needed.' And he said, 'We've got to think beyond ourselves.' Albert very much wanted to be an organ (and tissue) donor."
But it wasn't meant to be. Soto didn't meet requirements established by the Food and Drug Administration to donate life-saving internal organs, such as his heart, lungs, kidneys, liver, pancreas and intestines. In most cases, these rules specify that the brain must have died, while the heart remained beating with artificial assistance, according to a press release about Soto from the Donor Network of Arizona, a nonprofit organization that procures organs.
"In some circumstances, a person may be able to donate organs after the heart stops beating, but only when it can be determined that the person will die shortly after life support is withdrawn," the release stated. "A person who meets these criteria will have organs that are still viable so that they will work once transplanted. Mr. Soto was evaluated for this option but did not meet the criteria."
While doctors determine whether organ donation is appropriate on a case-by-case basis, there are some blanket rules governing tissue donation of such things as skin, bones, veins and eyes. These procedures are generally meant more to improve the quality of life than to save it.
One such rule specifies that men who have had sex with men in the past five years cannot donate tissues, just as they can't give blood.
"The underlying intent is for safety of the transplant recipient," the statement from the Donor Network of Arizona said. "Tissue transplants greatly benefit their recipients, but since they are not required to save life, the restrictions are more stringent regarding homosexuality and many other factors that may make a person more at risk for infectious diseases, including HIV and hepatitis."
According to the release, regulations also prevent tissue donation from "anyone who has been in prison for more than 72 hours" in the past year, intravenous drug users and those who have resided in the United Kingdom "for more than three consecutive months since 1980"--to protect against transmission of the brain-wasting Creutzfeldt-Jakob disease.
News about Soto's rejection was widely disseminated by a Nov. 28 Wingspan e-mail newsletter that described the FDA's policies as "discriminatory" and "antiquated." A handful of pledged organ and tissue donors called or e-mailed to condemn the Donor Network of Arizona, saying they would withdraw their commitments, spokeswoman Sara Pace Jones said.
"They interpreted this to mean that we set a local policy against donation from gays, and that's not the case," Jones said.
A week later, Wingspan sent out a newsletter that contained a response from Tim Brown, president and CEO of the Donor Network of Arizona. He noted that because regulations are established at the federal level, venting frustration locally by refusing to donate may do more harm than good.
According to the Donor Network of Arizona, more than 1,000 Arizonans are on the waiting list for organ donations that could save their lives. The organization's statistics show only 44,140 Arizonans are registered to be donors as of Nov. 30--a little more than 0.7 percent of the state's estimated population of about 5.7 million people.
"It's important for people to understand that this is a federal regulation," Jones said. "Outrage or wanting to change a policy should be targeted at that level. If we target the local level and have people who decide not to be donors because of this story, all that will do is hurt people in Arizona who are waiting for a transplant."
Regulations dictate that all organs and tissues be tested for Creutzfeldt-Jakob disease, West Nile virus, severe acute respiratory syndrome (SARS) and syphilis, in addition to HIV and hepatitis.
In light of the extensive testing, it's unclear why certain groups, such as men who have had sex with men, should be disqualified from giving tissues as a matter of course. An FDA spokeswoman didn't respond to a half-dozen calls and at least two e-mails seeking comment.
Regardless, Bernal called the current regulations "arcane," saying that what may have made sense as a way of protecting people from HIV in the uncertain times before 1990 may not make sense in 2005.
"It would have been one thing had they said to us, 'Look, was Albert promiscuous? Was he an IV drug user?" he said. "The really, really unfortunate part was Albert was an extremely, extremely healthy person who had abstained from sex for a number of years. He took very good care of himself. So, basically, he was denied the ability to donate life-enhancing tissues because he was gay."