When Rohn Neugebauer, an otherwise-healthy 48-year-old man, died suddenly of a heart attack on March 16, his family knew he wanted to donate his tissue and organs to someone in need. Just a few months earlier, he had co-hosted a fundraiser for a local organ donation organization, the Center for Organ Recovery & Education (CORE), that had raised several thousand dollars.
At the hospital a couple hours after Rohn died, his sister Sandy Schultheis told ThinkProgress she patiently answered nearly 20 minutes of questions from a CORE representative about his health and medical history. Then came the final question: Had Rohn been in a homosexual relationship over the last 5 years?
When she answered that Rohn was a gay man in a long-term relationship, the CORE representative said that, as a result, her brother was not an eligible donor. The interview was over.
There is no blanket prohibition on organ donations from sexually active gay men. Rather, CDC guidelines say that “men who have had sex with another man in the preceding 5 years… should be excluded from donation of organs or tissues unless the risk to the recipient of not performing the transplant is deemed to be greater than the risk of HIV transmission and disease.” That is defined as a circumstance where “emergent, life-threatening illness requiring transplantation when no other organs/tissues are available and no other lifesaving therapies exist.”
Dan Burda, who has been Rohn’s partner for the last 8 years, and who co-hosted the fundraiser for CORE, was very upset with the group’s decision. He started a campaign on Facebook to draw attention to Rohn’s situation. That soon drew the attention of WPXI, the local Pittsburgh NBC affiliate. The station posted an article detailing Rohn’s story, and CORE’s response, on their website on Wednesday afternoon at 5:00 pm. A short segment aired during the 6:00 broadcast.
But just a few hours later, without explanation, WPXI removed the story from the internet. An executive producer at the station who would only identify herself as Betsy told ThinkProgress that the story had been removed after Rohn’s father contacted them very upset and asked that it be taken down. Betsy confirmed to ThinkProgress that WPXI stood by the accuracy of their report, but took the story down because Rohn’s father said some members of the family did not know Rohn was gay and he didn’t want them finding out through the article.
Rohn’s sister said that he was an openly gay man and that anyone who knew him also knew of his long-term relationship with Dan.
In the deleted article (available through Google cache) CORE told WPXI they could not comment specifically on Rohn’s situation but cited an FDA guideline that prohibited the donation of human tissue from male donors that “who have had sex with another man in the preceding five years.” That prohibition does not apply to organ donation.
The rules on organ donations from sexually active gay men mirror, to some degree, the prohibition on blood donation from that group. The policy, which dates to the AIDS epidemic of the 1980s, was recently criticized by the American Medical Association as “discriminatory and not based on sound science,” and members of Congress are working to get it overturned. The AMA said decisions should be based on “individual level of risk” rather than sexual orientation.
Calls to CORE by ThinkProgress regarding their organ donation policy were not returned.
After publication, a representative of CORE contacted ThinkProgress. CORE stated that “Sexual orientation has no effect on a person’s eligibility for organ donation.” While not addressing Rohn’s case specifically, the representative stated that an individual who dies from cardiac arrest — as Rohn did — is not able to donate their organs. For tissue donation, CORE again referenced the FDA guideline which “requires CORE to conduct a medical/social history to screen donors for increased risk of transmissible diseases to ensure the safety of grafts for transplant. “ Under those guidelines, a man who has had sex with another man in the preceding five years is considered high risk and is not an eligible donor.