On her darkest days, when she was worried whether a critically ill patient would pull through, Dr. Rochelle Walensky would sometimes end a 14-hour clinical shift by donating blood. It was a simple way to give back, to give life, when another life might, despite her best efforts, be slipping away.
After a particularly difficult stretch in 2015, when she was a senior infectious diseases physician at Massachusetts General Hospital, Walensky asked Robbie Goldstein, a young doctor she was mentoring, whether he wanted to donate blood with her.
His response not only stopped her cold, it would lead to an eight-year mission by the two to help change the nation’s blood donation rules. Goldstein is gay, which meant he was prohibited from donating. But their advocacy, working from Massachusetts and then alongside top administrators in Washington, D.C., finally bore fruit: New rules announced earlier this summer that open donation to millions of gay and bisexual men recently went into effect. And on Tuesday, the two will mark that milestone by donating blood together — for the first time — at the Red Cross Dedham Donation Center.
The federal limitations on blood donations were based on decades-old science from 1985 designed to protect the nation’s blood supply from HIV, then a little-understood and deadly virus.
“I had spent much of my research time between 2000 and 2015 thinking about HIV screening and HIV testing,” said Walensky, who recently completed a two-year stint as director of the Centers for Disease Control and Prevention. “But it didn’t occur to me that as I was having the conversation, that this was going to be a painful conversation for Robbie, although I should have at the time been more sensitive to it.”
Walensky recently joined Goldstein, now Massachusetts’ public health commissioner, for an interview with the Globe about their work to change blood donation rules.
During the 1970s and 1980s, the US blood supply had been the source of thousands of HIV infections before scientists realized the virus was spread through blood and through sex. A screening test for HIV was not developed until 1985, and the first treatment for AIDS, caused by HIV, was not available until 1987.
Nearly three decades later, on that tough 2015 night, Walensky and Goldstein talked about the benefits of the blood donation ban — that it had saved countless lives in the 1980s and into the 1990s by protecting against HIV transmission — but that it had outlived its usefulness and by that time was perpetuating stigma for the LGBTQ community, as well as hindering donations.
“It was that moment of talking through the science, the policy, the stigma, and the way that it impacted the patients we were caring for, that we began to think through what could we do about this issue,” Goldstein said.
What they did was research the science and write an article, along with a colleague, Dr. Chana Sacks, that was published by the New England Journal of Medicine in 2016.
They recounted the thousands of people who lined up after the 2016 massacre at the Pulse nightclub, a gay club in Orlando, to donate blood and the many who were turned away because they were men who had sex with men.
They noted that the sensitivity of the HIV screening test was just shy of 100 percent, and that every blood donation is tested for HIV, making the risk of transmitting the virus through blood donations 1 in 1.5 million.
And they outlined what they called the “flawed logic” of the ban: that it prohibited a monogamous gay man who repeatedly tested negative for HIV from donating, but allowed donations from a heterosexual man who had recent unprotected sex with multiple women, any one of whom may have HIV.
Their article laid out a blueprint for the Food and Drug Administration, suggesting it adopt guidelines that are based on an individual donor’s risk — how recently they had new or multiple sex partners — rather than their sexual orientation.
“Frequently when Robbie and I get a bee in our bonnet about some issue that doesn’t necessarily make scientific sense, we will have a conversation and really decide to put pen to paper to try and see if we can do something about this,” Walensky said.
In 2020, the FDA updated its guidance, saying men who have sex with men would be allowed to donate blood if they abstained from sex with men for three months prior.
In early 2021, Walensky took over the helm at CDC, and soon brought Goldstein with her as her senior adviser. The two worked with the FDA and a team of others in the Biden administration to further review blood donation rules.
Later in 2021, the FDA launched a study of gay and bisexual men to determine whether the rules could be further updated.
After still more review, new rules were finalized in May that became effective this month at most blood banks. The new rules are gender-neutral; all donors are asked the same questions, and no one is automatically banned. The rules say that anyone who has had new or multiple sexual partners in the last three months, and also had anal sex in that timeframe, will be asked to wait three months to donate blood.
Right after Goldstein got the inside call in May that the FDA would be announcing the rules change, his first move was to contact Walensky.
“We did it!” he texted her.
“Oftentimes, working in government, there is a lot that you want to do and it takes time; it takes coordination and collaboration and it’s hard to get to that moment,” Goldstein said recently in describing that moment.
Today, Kelly Isenor, a Red Cross spokesperson, calls the updated rules “one of the most significant changes in blood banking history and will result in a blood donation process that is more inclusive than ever before.”
“The LGBTQ+ community has long been an important part of our humanitarian mission, serving as employees, volunteers and leaders in responding to disasters, training individuals in first aid and CPR, and more to support communities across the country in times of need,” she said in a statement.
Walensky, who weathered some harsh criticism while leading the CDC, said the new blood donation rules were a beacon of light for her.
“During some of my hardest, darkest times at CDC, I was like, ‘What are we doing? Are we doing anything? Are we making any forward progress?’ ” she said.
“And Robbie and I would reflect and Robbie would say, ‘We get to do this. We get to make a difference.’ And when Robbie sent me that text and he said, ‘We did it,’ I was like: He’s right, we get to make a difference.”
Correction: A previous version of this article misstated Dr. Rochelle Walensky’s title at Massachusetts General Hospital in 2015.