By Megan Gorrey
Ryan likens his years of dialysis for kidney failure to driving on a straight road through a desert.
“It’s unrelenting, it’s unchanging, it’s depressing. It’s hour after hour of your life dripping away from you. You just keep driving and staring at the horizon thinking, when will I get out of this?”
Ryan was given another chance when an HIV-positive kidney donor was available. Credit: Kate Geraghty
The 57-year-old Sydney man hit rock bottom when a donor kidney from his sister deteriorated seven years after the transplant, and he faced more dialysis and a possible six-year wait for a new organ.
His escape from that fate came from an unexpected source.
In an Australian first, doctors at Royal Prince Alfred Hospital in Camperdown transplanted a kidney from an HIV-positive donor to Ryan – who was diagnosed with HIV himself in 2006 – about two years ago.
“The disease that I’ve been worried about my whole life ended up saving my life,” said Ryan, whose name has been changed to protect his and his donor’s privacy.
Doctors say the success of the operation gives fresh optimism to HIV patients who need life-saving transplants and rolls back years of stigma attached to people living with the virus that causes AIDS. They hope it widens the pool of donors by encouraging more people with HIV to donate their organs.
“The door they’re opening is changing so many lives, and not just in the HIV-positive world, but in donation in general,” Ryan said.
Ryan, whose kidney damage was caused by an autoimmune condition, said before the transplant service called to tell him it had a possible match, he had been so low he considered stopping dialysis and switching to palliative care.
“Nothing can prepare you for that call,” he said. “They said, ‘We want to do a [transplant with an] HIV-positive kidney, will you be patient number one?’ You sit there and think, ‘Gosh a lot’s riding on this.’
“But it worked, and I’m doing really, really well.”
Dr Michael O’Leary, who is the state medical co-director of the NSW Organ and Tissue Donation Service, said the operation was “reassuring” as it showed people with HIV and organ failure could safely receive an organ from an HIV-positive donor. He said there may previously have been a view among some in the medical community that people with HIV were not suitable to be considered for organ donation.
“That’s not been the case for quite some time because we’ve been talking about it, and we knew if we had an HIV-positive potential recipient we could use the organs from that potential donor,” O’Leary said.
The service’s general manager Danielle Fisher said nothing prevented a person with HIV from registering to donate their organs, and transplant physicians were constantly updating acceptance criteria based on treatments that had drastically improved the medical outlook for patients.
“One of the principles in organ and transplant donation is about ensuring the best outcome for transplant recipients. We’re always very mindful of minimising risk around disease transmission.
“Historically, there has been a lot of stigma and taboo around HIV as a life-limiting illness; however, these days people live very well with HIV and there are many effective treatments.
“It’s about assessing the risk and if there is a potential donor who is very healthy aside from having HIV, and there is a recipient who has HIV, then that is up for consideration.”
In Australia, eligibility criteria prohibit anyone at higher risk of exposure to HIV from donating blood for three months after their last sexual activity, effectively banning sexually active gay and bisexual men from donating. However, organ donation is not similarly regulated by the Therapeutic Goods Administration (TGA), and each donor and their organs are assessed on a case-by-case basis.
A man who has had sex with a man can register to be an organ donor. Patients without HIV would not receive organs from an HIV-positive donor.
Ryan hoped his operation would help remove stigma attached to people living with HIV, encourage more people in the LGBTI community to register to donate their organs, and shorten waiting lists.
“My fear was being at the bottom of the queue. The HIV-positive to HIV-positive donation gives a little more hope that wasn’t there before, that there are opportunities that put you back on the list.
“And it does create a kind of VIP list. There are some organs coming online which are only eligible for you. At the beginning of the HIV story around the world, it was the LGBTQ community helping the community. This is us helping us again, and that’s so powerful.”
Fisher said organ donation was a rare event in Australia, and every donation was crucial.
“Only 2 per cent of people die in hospital in a way they could be donors, and on average only 50 per cent of families will say yes to donation in Australia.
“We encourage all Australians to register their decision to donate their organs. You can do so in three minutes on the Medicare app, or go to donatelife.gov.au, and talk to your loved ones about your decision.”