At this moment, more than 118,000 people in the United States are in need of a lifesaving organ transplant. And 64 percent of them are currently on a waiting list – to which roughly 1 person is added every 10 minutes – according to the United Network of Organ Sharing (UNOS). That’s 75,868 people in line for a transplant. Unfortunately, only about half of them will actually receive the transplant they need this year.
In 2016, UNOS tallied a total of 33,598 completed organ transplants, up from 30,969 in 2015 and 29,535 in 2014. While these numbers are positively trending upwards, the fact remains that each day an average of 22 people die while waiting for a transplant.
What’s most interesting is that one single person can potentially save the lives of more than eight others, if they are an organ – kidney, heart, lungs, pancreas, liver, intestine, and VCA – donor. And if someone is also a tissue donor – meaning they would donate bone, tendons, cartilage, connective tissue, skin, corneas, sclera, heart valves, and vessels – they can save, or change, the lives of nearly 75 people.
But, according to Donate Life America, while 95 percent of U.S. adults support organ donation, only 54 percent are actual registered donors.
In an effort to encourage more people to register as organ and tissue donors, folks at Penn Medicine are tackling the issue from a few different angles – from advocacy to research to policy.
“The fact of the matter is, we need more organ donors,” said Kim Olthoff, MD, chief of the division of Transplant Surgery. “If more people designate donation on their driver’s licenses, or if more people talk about the decision to be an organ donor with their families and loved ones, or if more people decided to selflessly participate in living donation, we would be able to save some many more lives with through transplantation.”
For starters, every year Penn Medicine participates in The Hospital and Health System Association of Pennsylvania Donate Life Challenge, a five-month campaign designed to encourage Pennsylvania hospitals to increase the number of organ and tissue donors, as well as raise donation awareness within their hospitals and throughout their communities. The 2017 campaign – which will include community and patient events, social media campaigns, advertising, news coverage and many other tactics to spread the word about donation – kicked off over the weekend.
“While we focus on encouraging organ donation all year, the HAP campaign gives us the opportunity to really pull together resources and manpower at our five hospitals for a coordinated campaign to educate faculty and staff, patients, and their families on the need for more organ donors and donor awareness,” said John Kirby, associate executive director of Operations at the Hospital of the University of Pennsylvania (HUP). “This is just another way for us, whether it’s as clinicians and surgeons or hospital administrators and members of the community, to help save lives.”
Outside of the annual Health System-wide awareness effort, there is also a significant research push toward finding ways to provide more lifesaving transplants.
David S. Goldberg, MD, MSCE, and Peter Reese, MD, MSCE, both assistant professors of Medicine and Epidemiology, are currently leading a clinical trial that aims to determine the safety and efficacy of transplanting kidneys from Hepatitis C-positive donors into patients currently on the kidney transplant waitlist who do not have the Hepatitis C virus (HCV). The team intends to transplant patients, determine whether they have contracted HCV, and then work to treat – and hopefully cure – the virus in these organ recipients.
Early results of this study will be presented for the first time later this month at the American Transplant Congress in Chicago, but all signs point to a potentially viable option for some patients.
"We always dreaded hepatitis C," said Reese, in an Associated Press article. "But now hepatitis C is just a different disease." In a press release about the trial launch this past fall, Reese said, “There are more than 99,000 Americans are awaiting a kidney transplant. Yet despite very long waiting times for transplant, hundreds of otherwise good kidneys from deceased donors infected with Hepatitis C are discarded each year. If we can demonstrate that it’s possible to eradicate HCV from patients who contract the virus from a transplant, this approach could open up access to an entirely new pool of donor organs that are currently being discarded. Ultimately, our hope is that this trial will show that it is possible, and will then afford far more patients who are on the waiting list an opportunity to receive a lifesaving transplant much sooner.”
Separately, Goldberg is has dedicated much of his academic career to identifying processes and system improvements which can be made in order to make more organs available to those in need – whether for veterans or those specifically awaiting liver transplant in different geographic areas. STAT News dove into this topic – as did many other reporters nationwide – in August 2016, with a piece that scrutinized the federal guidelines and organ allocation. The article opened with “hospitals across the United States are throwing away less-than-perfect organs and denying the sickest people lifesaving transplants out of fear that poor surgical outcomes will result in a federal crackdown. As a result, thousands of patients are losing the chance at surgeries that could significantly prolong their lives, and the altruism of organ donation is being wasted.”
It this same article, Howard Nathan, CEO of the Gift of Life Donor Program said, “to me, it just doesn’t make any sense. We have hundreds of thousands of people on dialysis. And you have these kidneys available that would work … but transplant centers are afraid to use them because they might pull their results down.”
While there may be a few centers looking at possible patient outcomes and making transplant decisions accordingly, there are great many cases in which the organ is, in fact, too damaged to transplant. As Goldberg said in a Philadelphia Inquirer story about the HCV kidney transplant trial mentioned above, "last year, about 12,000 people in the U.S. got a deceased donor kidney transplant. There could be, at a minimum, maybe 1,000 more transplants if this is successful.”
The researchers — and may others at Penn and across the country — hope that this study will be the first step toward unearthing an entirely new pool of available organs — initially for kidneys, and down the line for hearts, lungs, and livers.
And in another Penn project, researchers are studying the potential benefits for some patients to accept kidney transplants from deceased diabetic donors, rather than remaining on the organ transplant list for a “lower risk” transplant. This could open potential for patients, who may otherwise face five to seven years, or even longer, on the waiting list with the chance at a life-saving transplant much sooner.
While these efforts are currently looking at organ donation from deceased donors, there is also a need for more living donors; like Kristen Miles, the 22 year old woman who donated part of her liver here at HUP in February to a 16-month old patient at Children’s Hospital of Philadelphia, who she had recently started caring for as a nanny; or Methodist minister who donated a kidney to Reform Rabbi Andrew Bossov at HUP in 2007 — the pair just recently celebrated the 10-year anniversary of the transplant.
“When my donor said, ‘I’ll give you one of mine!’ I really felt as though I was witnessing a miracle,” Bossov said. “Since first receiving the diagnosis that I had active kidney disease, then being told nine years later that a transplant was finally needed, I feared for my ability to work and provide for my family, and how dialysis and a worsening condition might affect my day-to-day life. The hopefulness that my donor brought was indescribably helpful toward keeping me focused on improving my situation. When we were both finally cleared for surgery and the transplant took place, I felt unimaginably joyful.”
While there is only so much that can be done in terms of policy and research, raising awareness around the need for more organ donors remains paramount in the effort to save more lives. As this week kicks of Donate Life Month, we’re encouraging more people to think about donation, to talk about it with their loved ones, and to designate themselves as an organ donor. This selfless act could mean saving the lives of up to eight individuals and changing the lives of countless others around those who are suffering.