When 16-year-old Alexander "AJ" Betts Jr. took his life last year after being bullied, six of his organs — including his heart, lungs, and kidneys — were donated to others. But because he was gay, his eyes were not.
Betts' mother, Sheryl Moore, only just learned this, over a year after her son's passing, and she's angry with the "archaic and completely outdated" Food and Drug Administration (FDA) regulation behind the decision.
Created in response to the AIDS crisis of the 1980s, the FDA regulation deems ineligible any donations from "men who have had sex with another man in the preceding five years."
"I understand why the regulation was created over 30 years ago, but it no longer applies, because they took his heart, they took his lungs, they took his liver and his kidneys. Why couldn't they take his eyes?" Moore, of Pleasant Hill, Iowa, told VICE News.
Betts' organs were able to be donated because vascular organ transplantation is regulated by the Health Resources and Services Administration (HRSA), which does not ban gay men from donating.
Eyes — like skin and bone — fall into the category of cells and tissues, and are therefore regulated by the FDA. There is always a big demand for life-saving organs, so "the criteria for donation are different for organs compared to the criteria for tissues, since the supply of most tissues is more robust," FDA spokeswoman Jennifer Rodriguez told VICE News.
'That process was so last minute and really foreign to me that it never occurred to me to say hey, what about my son's eyes?'
HRSA spokesperson David Bowman told VICE News that, "prior to organ donation, the organ donor is tested for a number of infectious diseases to minimize the potential for transmission to organ transplant recipients."
Yet Moore only learned about this regulation because she happened to bring up the issue of her son's eye donations when preparing for a lecture for the Iowa Donor Network, the organ procurement organization through which his organs were donated in July 2013.
Betts' mother said she wishes that she had known more about the process before being faced with a decision. "When AJ died, it was within just a couple of minutes that the organ donation people came in and asked to speak with me, and it was pretty overwhelming.
"That process was so last minute and really foreign to me that it never occurred to me to say hey, what about my son's eyes?" she added.
Moore was unable to definitively say that her son had not had sex, and so staff erred on the side of caution in deeming the teenager ineligible to donate tissue.
'The lifetime ban on blood donation for men who have sex with men is discriminatory and not based on sound science.'
"What we do in working with the FDA is confirm with them each year that they're doing the proper research and analysis with all of their policies to ensure that, one, we're able to maximize the gift of donation," Tony Hakes, public outreach manager of the Iowa Donor Network, told VICE News. "The last thing we want is for someone to be a donor and we're not able to honor that gift or maximize that gift. And two, to make sure that they're still ensuring recipient safety. Whatever their policies are, we're bound to adhere to those."
The FDA has also banned any blood donations from gay men since 1983 because "a history of male-to-male sex is associated with an increased risk for exposure to and transmission of certain infectious diseases, including HIV."
This policy has also drawn criticism, including from the American Medical Association, which last year voted to allow gay men to donate blood.
"The lifetime ban on blood donation for men who have sex with men is discriminatory and not based on sound science," said AMA board member Dr. William Kobler.
Now Moore hopes to raise awareness about the FDA regulation with the hopes of getting it changed.
She said of her son: "He was the kindest human being I've ever known, and it really hurt that the only one thing that he asked for which was to donate as much as he could if something happened to him was not honored because he was gay. I just really wanted AJ's final wish to be honored."
Follow Jordan Larson on Twitter: @jalarsonist
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