Penn Medicine has opened the Center for Living Donation, bringing its services under one roof for patients receiving kidney, liver and uterus transplants with organs donated by living people.
By pooling the resources of these programs, Penn leaders hope to increase the number of living transplants, expedite care for people waiting for organs from deceased donors and address racial disparities among those who benefit from organ transplants.
Organ transplantation is often the only treatment option for people with severe liver and kidney disease. But demand for new organs far outstrips supply, meaning patients often spend years on waiting lists as their health continues to decline. Some die before reaching the top of the list.
Most transplants involve organs donated by the families of those who have recently died, such as sudden accidents such as car accidents, but whose organs are still healthy. However, many people can safely donate organs while they are alive. For example, humans only need one of two kidneys to live. Because the liver can grow back, doctors can remove the part for transplant.
Penn’s new center aims to increase living donor donations as a way to help more patients sooner.
“Any time they can shave off waiting is a health benefit,” said Teresa Bitterman, medical director of Penn’s Living Donor Liver Transplant Program.
Living donor transplants account for about 30% of kidney transplants and only 5% of liver transplants, according to the Mayo Clinic. Most living donors give to a family member or close friend, although anonymous donations do occur, Bitterman said.
Deceased organ donation is managed by hospitals and national organ donation programs such as Gift of Life. Patients have little control over their place on the waiting list or when an organ may become available.
Live organ donation, meanwhile, is often a product of patient hustle and social networking skills. Patients who want to consider living donation can talk to friends and family about testing to see if they are a match. Families have set up social media campaigns, GoFundMe drives and printed bumper stickers to cast a wider net.
Those with more financial resources may be able to take their campaign to the next level. For example, a Bucks County man recently purchased dozens of billboards and ads at transit stations urging kidney donors to come forward.
Janhavi Raine donated a kidney to a good friend in the fall of 2021. Raine, a 49-year-old dentist from Plainsboro, N.Y., said she spent two days in the hospital and was back in the gym four weeks later.
The procedure left her with a three-inch scar where her stomach meets her groin.
Since then, people who have heard of Rayna’s donation have gone above and beyond what she thinks is necessary — praising her for her pious act and putting her on a pedestal.
“It’s not as traumatic as people expect,” she said.
The new Living Donation Center will focus on public health education to dispel myths and help patients advocate for themselves.
Organ donation procedures are considered major surgery, and recovery times vary depending on the organ. But people who are generally healthy without underlying medical conditions should be able to resume their normal daily routines after weeks or months of recovery, Bitterman said.
“It’s hard to have the conversation, to ask your friends and family to be donors,” she said.
Another major commitment of the new center is to expand access to living donations, especially for people who have historically been underserved.
Revised eligibility and waiting list rules dramatically reduced racial disparities in deceased-donor organ transplants several years ago, but blacks still receive far fewer living-donor transplants than white patients, a study found.
Improving the donor experience – for example, simplifying tests and providing more assistance in recovery – could make it easier for people to donate.
So the organ exchange program that Penn used among kidney patients could also be expanded to include patients in need of liver transplants. Patients with a willing but mismatched donor can be matched with another matched patient and donor. Patient A’s donor donates to patient B, and vice versa.
To be a match, donors and recipients must have compatible blood types and tissue types.
The new center will also expand Penn’s nascent womb transplant program, which performed its first live transplant in 2020. Womb transplants are relatively new, but they allow people born without a fully formed uterus to carry and deliver babies.
For her part, Raine plans to raise awareness of living organ donation on the international stage next month, at the Mrs. Universe in Bulgaria.
Rayne, who represents the eastern United States, decided to enter her first pageant after donating a kidney in part because she wanted a platform to encourage others to consider organ donation.
She plans to tell the audience that donating a kidney didn’t change anything in her day-to-day life or health – but it made a huge difference “to someone whose life depended on this one organ”.