"Times have changed," he said. "Those with HIV are living long and very productive lives, and those that have received a transplanted organ are doing very well. Changing this rule would be a phenomenal decision ... and would only be controversial among lay persons who don't keep up with treatment of HIV."
In Illinois, the law reversing the ban was not controversial, said Dr. Michael Abecassis, chief of the division of organ transplantation at Illinois Northwestern Memorial Hospital and a driving force behind the change there. He said a politically connected patient took the idea to the legislature, which approved of the measure with large majorities. It was signed by then Gov. Rod Blagojevich.
Abecassis, also the president of the American Society of Transplant Surgeons, said when the governor asked who might oppose the change, "We said nobody. This wasn't a struggle at all."
After consultation with HIV specialists, he said that he believes existing antiretroviral medications would be effective against any strain introduced through an infected organ, and anyone who had developed drug resistance would be disqualified from donating organs. New clinical trials wouldn't be necessary, he said.
"It occurred to me that we waste a number of organs every year in this country," said Abecassis on the origins of the Illinois law. "Why can't we use HIV positive organs on HIV positive recipients? ...Those people could go right to the front of the list."
But a change in the statute is needed. A spokesman for the Health Resources and Services Administration, the government agency that oversees the organ donation system, said he was unaware of any lawmaker taking up the HIV ban. No other diseased donors, including those with cancer, are absolutely barred from donation if the organs are deemed suitable.
Segev said he'd like to take the issue to Capitol Hill. And at least one advocacy group is evaluating the next steps. That's the civil rights group Lamda Legal, which fought a decade ago for the rights of those with HIV to get transplants of healthy organs and still battles with states that continue to deny public funding for such transplants.
Scott A. Schoettes, the group's HIV Project director, said the group recently began learning about the federal ban and hasn't decided on measures — or even how hard such an effort would be.
"It wasn't a slam dunk at the beginning," he said about the original transplants in HIV patients. "And it lingers a decade from when the first transplant occurred."
But one thing is certain, said Schoettes, who is HIV positive. He would like to again register as an organ donor. "I don't have that option anymore and I welcome the possibility. I imagine others do, too."
April has been designated Donate Life Month in an effort to encourage people to sign up to be organ donors.
+More than 110,000 Americans are on the waiting list for a transplant, including more than 2,000 in Maryland
+Almost half of Marylanders have indicated their donor designation on the Maryland Donor Registryhttp://www.donatelifemaryland.org/about.aspx
+Nine lives can be saved by one donor
+There were 2,406 transplants in January from 1,195 donors
Source: Donate Life Maryland, United Network for Organ Sharing