Melvin “Zuni” Johnson spent 48 hours in a Charlotte hospital battling pneumonia related to COVID-19 last month. His husband Jason McCraw had a milder case that only sidelined him for a few days. Both have valuable antibodies in their plasma, but the couple cannot donate because of U.S. Food and Drug Administration (FDA) rules on blood and plasma collection.
“It infuriates me,” said Johnson, 45. “If we can give our antibodies, please let us do that.”
LGBTQ advocates have long criticized the FDA’s rules that target sexually active gay men. These same restrictions apply to anyone using HIV prevention drugs. Johnson and McCraw are on PrEP.
LGBTQ organizations increased pressure on elected officials to get the FDA guidelines changed amidst a call for more blood donations during the pandemic. During early April, the FDA caved slightly. The restrictions date back to the early 1980s when AIDS was still described as a “gay plague.” Back then, the FDA had a lifetime ban on any man who had ever had sex with another man. That changed a few years ago when the 12-month abstinence rule was put in place. Recently, the FDA said that sexually active gay men can donate after a three-month period of abstinence. The FDA also changed rules for other classifications of perceived risk, such as tattoo recipients.
Chelsea Gulden, vice president of operations at RAIN, calls the restrictions “draconian.” The rules, even with the revision, still stigmatize gay men, she said. HIV impacts people who identify as bisexual or straight, including women who have anal sex. We don’t ask women if they are on birth control. The assumption is that if a man is taking PrEP, then he must be having unprotected sex, Gulden said.
“We target and isolate gay men and say you are not good enough,” she said.
For Johnson, this issue has become personal in a way that it wasn’t previously. He and McCraw, 45, have friends out of state fighting for their lives because of the virus. People who recover from the coronavirus develop antibodies that remain in their plasma. An FDA-approved experimental treatment involves transfusing the plasma that contains the antibodies into a person fighting the virus to boost the patient’s immune system and potentially help them recover.
Johnson knows he and McCraw are lucky.
The couple is known for Twirl To The World parties that raise money for various local charities. Their tangle with COVID-19 started when they returned from a trip on March 13. They thought they were suffering from seasonal ailments, but their condition worsened. The next week they were tested for COVID-19. Johnson said the flu test is administered first and it is “excruciating.” “The swab is administered through the nasal cavity and feels like they are trying to reach your brain,” he said. The coronavirus test is oral.
Both tests were administered while they sat in the car. Back then, it took days to get results.
Meanwhile, Johnson got worse. His doctor ordered more X-rays. By the end of the week, Johnson was admitted to the hospital with pneumonia. Driving up to the entrance he felt he was entering a military zone, Johnson recalled by phone. McCraw pulled up to the entrance, a guard told Johnson to get out and told McCraw to leave. He was not even allowed to park. No kiss good-bye, no nothing.
Johnson stayed in isolation in the emergency room for seven hours before he was given a room — also in isolation. Another set of X-rays showed that his lungs looked worse. Still no test results. All doctors could do was treat the infection in his lungs that caused the fevers. The hospital released him into self-quarantine 48 hours later with still no test results.
Walking through the hospital, it was like a ghost town, he recalled. He said he only passed two or three workers there as he exited.
“It was just an eerie feeling,” he said.
Johnson said, the coronavirus test results came the next day while he was home recovering. He was positive, but McCraw’s results did not arrive for another day. Johnson worried that he might have infected his husband.
“It was 24 hours of freaking out,” he said.
McCraw’s results finally arrived and he tested positive as well. Their positive test results and their recovery makes their plasma valuable. Even if the FDA eliminated the waiting period for gay men, the couple would still need to wait at least 14 days after symptoms disappear and test negative for COVID-19.
The FDA left it up to local blood centers to make regulations for collecting donations from people using HIV prevention. Representatives from American Red Cross and OneBlood say they are working to implement the new guidelines. The Red Cross is national and One Blood operates in several states. Officials need to update paperwork and other information to roll out the changes across their centers, but it’s something both organizations sound eager to do.
“The Red Cross is working aggressively to implement the FDA’s changes as soon as possible,” said Red Cross Communications Manager Maya Franklin in an email.
“OneBlood supports the changes the FDA made to donor eligibility. It will allow more people to be entered into the donor pool, and that is always welcomed news,” said Susan Forbes, senior vice president, corporate communications and public relations, in an email OneBlood is actively working to implement the FDA-announced changes. FDA will be providing an updated Donor History Questionnaire (DHQ) to reflect the recent eligibility changes. Once the new DHQ is provided, OneBlood will update and adapt our computer system and policies to reflect the new donor eligibility.”
The changes are a step in the right direction, but Johnson could not handle not doing anything to help. They recently announced the Twirl Assistance Program (TAP), and specifically the Immediate/Emergency Need Program (COVID-19).
For now, the men behind Twirl The World can’t give their blood, but they are trying to give gays and lesbians impacted by the virus a little slice of hope.