Facebook becomes lifeline for some patients seeking organ donations

Jason Rubinstein’s kidneys were failing, and as he anxiously waited for an organ transplant, the Ohio patient knew time wasn’t on his side.

Rubinstein turned to Facebook to share his health struggles. His wife’s friend from high school read the post, stepped up to donate and turned out to be a match.

“Up until the point where you’re wheeled into the hospital room, you’re nervous it’s going to fail or something is going to backfire. I was so relieved when I found my donor,” said Rubinstein, a father of five who had a transplant in 2010.

Five years later, a growing number of patients like Rubinstein are using the site to find living donors. Johns Hopkins Hospital is piloting an app to make it easier for people who need transplants to craft a Facebook post. And an ethical debate rages on in the medical community.

Some medical ethicists fear the use of social media creates a separate organ donation system in which the cutest kid or most computer literate person receives a transplant, allowing them to bypass long waits for organs from the deceased.

“There’s potential discrimination and unfairness. The more tech-savvy you are the more likely you are able to make this work,” said Dr. Robert Veatch, a medical ethics professor at Georgetown University’s Kennedy Institute of Ethics. “Closely related to that, the effect is likely to increase the transfer of organs to people who are attractive recipients.”

In the United States, 122,543 people are waiting for an organ transplant and an average of 22 people die every day because they don’t receive one in time, according to October data from the Organ Procurement and Transplantation Network.

The network doesn’t track how many patients find a living donor through Facebook or other sites, but some transplant surgeons say they’ve seen more patients using social media. They don’t see anything wrong with using the sites, noting it’s just another way to have a conversation about organ donation.

Others, like Veatch, feel social media use runs around carefully crafted policies that aim to distribute organ donations in the fairest way possible.

The United Network for Organ Sharing, a nonprofit that manages a national transplant waiting list, uses a complex formula to decide who on that list gets an organ from a deceased donor or a living person who decides to donate to anyone. The nonprofit considers how sick a patient is, how well a donor would match, the length of time an organ has to travel and other factors.

Living organ donors, though, can direct their donation to a friend or stranger after being evaluated by the transplant center. In rare cases, families of a deceased donor have also requested that an organ go to a specific person.

Ethical concerns, doctors say, aren’t unique to social media and have existed as long as anxious parents have made impassioned pleas on television or patients rented billboards to share their plight with the masses.

In 1982, an 11-month-old girl, Jamie Fiske, received a liver transplant after her father — a mental health administrator with the Boston University School of Medicine — delivered a passionate speech at a New York pediatrician convention. Television stations covered the father’s plea, catching the attention of a Utah family who lost their young son in a car accident and came forward to donate his liver.

Dr. John Roberts, chief of the University of California, San Francisco’s Transplant Service, recalled one time when about 75 people came forward to donate an organ to one patient who had posted on Facebook.

The center also has a health history questionnaire that patients can link to, which helps potential donors start the transplant process.

“Social media took us a little bit by surprise because we had so many people signing up (to be organ donors),” he said.

Dr. Todd Pesavento, director of the Comprehensive Transplant Center at Ohio State University’s Wexner Medical Center, said that in the last five years he’s seen more patients at his center finding living donors for kidney transplants through social media, and he can see why.

“I think patients know that their outcomes are much better with a living kidney transplant as opposed to a deceased donor,” Pesavento said. “There’s a lower risk of infection, being hospitalized, and certainly their overall quality of life is better when they find a transplant right away.”

Despite the ethical questions raised, there’s one point that ethicists, surgeons and patients agree on: the more donors that step forward, the more lives doctors can save.

Teaming up with Johns Hopkins University’s School of Medicine and Donate Life America, Facebook in 2012 started allowing people to share on their timeline if they’re registered as an organ donor upon death, prompting thousands to sign up.

On the first day, 13,012 new donors registered online, which was 21 times higher than the average daily registration of 616 new donors, according to a study by the university. Facebook, which is based in Menlo Park, did not immediately have an estimate of how many people have shared their organ donor status since 2012.

But that work still isn’t done.

Dr. Andrew Cameron, surgical director of liver transplantation at Johns Hopkins Hospital, said that he worked with Facebook to develop an app called “Donor.” It walks patients through how to create a Facebook post that describes their disease, and what it’s like to be on dialysis and wait on a transplant list — a conversation that at times can feel awkward and be difficult to start.

The app was recently tested at the medical center with more than 50 patients, showing signs of success. Cameron said he’s planning to expand this pilot to include 300 patients in hospitals nationwide, including in California, before releasing it publicly.

“People who had been on the waitlist for years and years immediately started to identify family and friends who were inclined to donate but just didn’t know the situation,” he said.

For some patients, Facebook is a way to get more support even if they don’t end up getting an organ transplant by posting their story.

In January, after starting a blog, California resident and UCSF Medical Center patient Erin Saunders created a Facebook page “Erin Needs a Kidney,” garnering more than 700 followers. The last time she was on dialysis, a blood-cleansing treatment, she waited eight years for a kidney transplant, a process she did not want to repeat.

Friends and complete strangers who saw her Facebook page offered to get tested for a transplant, but a high amount of antibodies in her system made it difficult to find a match. The silver lining, though, was the antibodies also gave Saunders a priority spot on the waiting list. After eight months, she was taken off the list and received a kidney transplant in September.

“I feel like so many people through Facebook and other networks were praying for me,” Saunders said. “It felt like a miracle that they actually found a kidney for me.”

Now her Facebook page reads “Erin Got a Kidney,” including a photo of the patient holding two thumbs up.

Contact Queenie Wong at 408-920-2706. Follow her at Twitter.com/QwongSJ.