Months before his death, he decided to become an organ donor: Wink’s Blog
August 18, 2014 by Wink
It’s been just over a year since Sheryl J. Moore’s (CEO of Wink, Inc. and Moore Market Intelligence) son took his own life. Sheryl recently learned that while AJ’s organs– heart, lungs, kidneys– were donated, his eyes were not. Why were his eyes ineligble to donate? We would like to share AJ’s donation story and Sheryl’s fight to change outdated regulation, with our friends and colleagues.
See a couple of the local news articles below:
KCCI:
Gay teen’s tissue donation denied
It’s been just over a year since bullied 16-year-old AJ Betts took his own life at his home in Pleasant Hill.
Months before his death, he decided to become an organ donor. But his mother has learned his wish was not fully granted because he was gay.
Sheryl Moore received a letter telling her what became of her son’s kidneys, liver, heart and lungs.
“I was very happy to hear that a 14-year-old boy got his heart. He would have really liked that,” Moore said.
She couldn’t help but feel the letter was incomplete since part of his donation was denied.
“My initial feeling was just very angry because I couldn’t understand why my 16-year-old son’s eyes couldn’t be donated just because he was gay,” Moore said.
His eyes were rejected because of a Food and Drug Administration regulation. The regulation came about decades ago at the height of the AIDS epidemic. It makes would-be donors ineligible to donate certain tissue if they’re believed to have a “risk factor” for communicable diseases.
Because Moore could not confirm whether her son had been sexually active or not, the donor network had to assume he had been sexually active in the last five years, thereby ineligible to donate tissue or his eyes.
The exclusion is not limited to certain tissue donations. Gay men are also banned for life from donating blood. It’s a regulation that many say needs to be updated.
“This is archaic, and it is just silly that people wouldn’t get the life-saving assistance they need because of regulations that are 30 years old,” Moore said.
Recently, national medical organizations have publicly stated their opposition to the current FDA law, and Moore hopes AJ’s story will help more people see why.
The FDA does allow donations from heterosexuals who have slept with an HIV-positive person or commercial sex worker after one year, but many experts say that’s a contradiction.
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The Des Moines Register:
Mom calls to lift ban on tissue donations from gay men
Sheryl Moore hoped at least in death the insults to her son would stop.
Her son, A.J. Betts, took his own life in July 2013 in part, she believes, because of an unrelenting barrage of high school bullying about the 16-year-old’s sexual orientation and race.
But Moore recently learned of a final slight in the most unexpected of places: the operating room where surgeons harvested his organs for donation.
A.J.’s heart, lungs and kidneys all went to needy recipients for lifesaving surgeries. But other tissues — such as bone, tendons and the corneas of his eyes — were rejected because A.J. was gay and had an unknown sexual history.
The Iowa Donor Network recently asked Moore, of Pleasant Hill, to speak to the group. She had gone the extra step of keeping A.J.’s body functioning for four days after he was brain dead so that his oxygen-deprived organs would have a chance to heal enough to be viable for transplant.
The Donor Network asked if Moore had any questions about A.J.’s donations. She asked why his eyes weren’t donated. They told her FDA regulations prevent the donation of tissues not considered lifesaving from gay men who have had sex with other men or have an unknown sexual history.
“I was floored,” Moore said. “It didn’t make any sense to me at all. This is an archaic regulation, and it’s completely discriminatory. I never planned on becoming a gay rights activist, but I guess I am now.”
Rules aim to curb spread of disease
Whole organs — such as the heart, lungs and kidneys — are considered lifesaving donations. Many people on transplant lists die because of the paucity of matching donor organs available.
However, other tissues — such as bone, skin, heart valves and other matter — are classified as life-improving donations and subject to different scrutiny.
The “FDA’s regulation of tissues … establishes layers of safeguards that are meant to prevent the spread of communicable diseases, such as HIV and hepatitis, through donated tissue,” FDA spokeswoman Jennifer Rodriguez said in an email.
FDA rules specifically ban donations from men who have had sex with another man in the last five years due to the risk of HIV and hepatitis B, Rodriguez said.
In A.J.’s case, Moore did not know her son’s sexual history to a certainty.
“I mean, he was 16,” she said. “I never even saw him hold hands. I never heard him say he had a boyfriend. But I couldn’t rule it out completely.”
The FDA rules on tissue donation mirror federal regulations on donating blood. Men who have sex with other men are not allowed to donate blood.
However, women who have had sex with a man who has had sex with another man may donate blood one year after their last sexual contact with that partner.
Those who defend the decision to bar tissue donation from men who have sex with men cite statistics such as these: About half of all living HIV patients in the U.S. are gay men, though gay men make up about 4 percent of the nation’s population, according to the U.S. Centers for Disease Control.
CDC data also show that about 63 percent of new HIV cases occur among men who have sex with men.
Donor restrictions started in 1980s
The FDA regulation dates to the early 1980s, when many hemophiliacs — people whose blood does not naturally clot — contracted HIV and AIDS through blood transfusion.
The most horrifying case involved the Goedken family of Monticello. Five of Mary Goedken’s seven sons, two of their wives and an infant grandson all died of AIDS between 1987 and 1997.
The men, all hemophiliacs, contracted the disease through a blood-clotting product contaminated with HIV. The CDC estimated no other family lost more members to AIDS than the Goedkens.
To prevent further outbreaks, the FDA banned the highest-risk population: sexually active gay men.
Part of the problem in the 1980s and early 1990s was that testing for HIV was relatively primitive. It took up to 45 days between infection and detection.
New testing that began in 1999 reduced that window to about seven to 10 days after initial infection. There hasn’t been an HIV transmission from a blood transfusion since 1987. And clotting agents, like the ones that killed the Goedkens, are synthetically manufactured now.
Still, the blood and tissue donation restrictions remain in place. The FDA holds firm, saying mistakes could be made.
But the American Association of Blood Banks, America’s Blood Centers, the American Red Cross and the American Medical Association have all issued statements urging the FDA to reconsider its ban on blood donations by men who have sex with men.
Some have called for a one-year ban, while others argue that a stronger screening process to investigate the habits of donors is needed, rather than a ban based only on sexual preference.
Mother pushing to ease donor ban
The Iowa Donor Network believes the blood and tissue ban from gays is “an older policy and an archaic policy,” said spokesman Tony Hakes.
However, the Donor Network must follow FDA guidelines to continue helping recipients.
Moore, a mother of four and CEO of three firms that monitor indexed annuities for the insurance industry, plans to add her voice to those pushing for more inclusive blood and tissue donation rules for gay men.
For now, she takes comfort in what happened with her son’s organs. One kidney went to a 49-year old woman who had undergone dialysis three times a week since 2010.
Another kidney went to an 11-year-old fifth-grader who loves video games and playing baseball. A.J.’s liver went to a married man with a child.
His lungs went to a 60-year-old man who plays cards, watches TV and spends time with his grandchildren.
And his heart went to a 14-year-old boy who loves sports.
She hopes the recipients will reach out to her. She would like to meet the people who carry parts of her son inside them. But she is heartbroken that A.J.’s eyes weren’t donated.
Wink’s Note: Awareness on this issue was recently shared worldwide. For those that wish to see a change in this regulation, you can sign the current petition on change.org here: http://www.change.org/petitions/c-o-r-e-fda-change-the-policy-of-automatically-excluding-homosexuals-from-donation-of-organs-and-tissue-and-blood-donation
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