Giving the ultimate gift

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Facing the organ shortage

Finally, a function for Facebook?

People gathered. An adult and two kids hold yellow boards saying 'liver recipients' and '2009'

Liver-transplant recipients gathered at the annual Alabama Organ Center Celebration of Life Picnic, which brought together doctors, nurses and other staff with hundreds of patients and their families.

On May 1, 2012, the day that Facebook allowed users to change their status to “organ donor,” state transplant registries recorded 21.1 times the usual number of registrants. According to a study published Tuesday, by the time the registration rate had fallen to baseline 13 days later, 5.8 times the usual number of donors had registered.
That comes to 33,000 extra donors.

U.S. transplants rates and waiting lists

Diagram shows number of transplants in 2012 and 2013. Most waiting lists are larger than the transplants done in 1 year.

The U.S. Organ Procurement and Transplantation Network tracks waiting lists, donation and transplants. Only a small portion of patients on the waiting list got necessary transplants. The shortage is most serious for liver, pancreas, and kidney patients.
Modified from original image by Shutterstock, data from U.S. Department of Health & Human Services.

Even though 100 million Americans have agreed to donate their organs after death, a shortage remains, says Andrew Cameron, associate professor of surgery at the Johns Hopkins University School of Medicine. “Over 100,000 people are waiting for a transplant, and 18 people will die today for lack of a transplant.”
The results, Cameron says, are a “beta version of how to use social media” to achieve socially beneficial goals. A 2012 study found that a notice in Facebook had a measurable effect on improving voter turnout in the 2010 elections.

A deadly shortage

The change was ushered in by Sheryl Sandberg, Facebook’s chief operating officer. “She comes from a medical family,” says Cameron, “and she worked on organ donations at Harvard Business School. I am a transplant surgeon … and we talked about how Facebook could be helpful in reigniting the discussion on organ donation.”

Ever since the first heart transplant was performed in 1967, improvements in surgery and drugs have expanded the range of transplantable organs to include the kidney, liver, pancreas and lung.
More than 120,000 patients have received a liver transplant since 1988, but more than 15,000 Americans are awaiting a liver, and patients die on the waiting list, says Cameron, a liver-transplant specialist. “There is no dialysis for the liver.”
The liver performs many reactions to detoxify waste products and produce essential chemicals that aid blood clotting and fat digestion.
Patients with liver failure “become yellow, terribly confused, may begin to store a huge amount of fluid in the belly,” says Cameron. “They may start vomiting blood and die; it’s a medieval existence that is horrible to behold.”
But when a patient with only days to live gets a transplant, “almost always they are restored to completely normal health,” Cameron adds, noting that a liver transplant recipient won a gold medal in Olympic snowboarding.

“An amazing disconnect”

Want to officially register as a donor? In Facebook, you would select your own state on this page and follow the link to your state’s organ donor registry. Rollover image to see how you would create a new “Life Event” in Facebook: click “Health and Wellness” and “Organ Donor.” Now you can share your donor status with your friends.
Credit: 1, Facebook, Fair Use. 2, Facebook, Fair Use

95 percent of the public favors organ donation and transplant, Cameron says, and in a “spectacular accomplishment,” U.S. motor vehicles departments have signed more than 100 million potential donors. “But we have this amazing disconnect: only 30 to 50 percent have signed up at the DMV. This suggests that there are inefficiencies, obstacles that make it harder to do the right thing.”

Maybe, Cameron suggests, the DMV is the wrong environment to “have a conversation about this very intimate issue: ‘What happens to me after I die?’ They may do better with friends; that’s where they discuss music and politics. If we can make this into something as easy and comfortable as Facebook, we stand a better chance of bringing people into the discussion at their comfort level.”

Cameron hopes further analysis will pinpoint what is motivating the Facebook users to register. “We are very interested to understand whether it’s people making an individual decision, or whether you need to see one, two, three or four friends make the decision before you are motivated.”

And while the experiment succeeded for 13 days, the “Facebook Effect ” faded away, Cameron admits. “This is a promissory note about the potential power of social media to remind people to do the right thing. We are looking where Facebook worked, and where it did not, and what we could do to recoup the virality.”

Already, Cameron says, Facebook users in 17 countries have the donation option, and it will be available to all 1 billion users soon.

The organ-donor shortage, Cameron says, is a social crisis, not a medical one. “There is this potentially miraculous, life-saving transformation, and it’s only possible by somebody deciding, ‘After I’m gone, and no longer have a need for my organs, I will share.’”

— David J. Tenenbaum

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Terry Devitt, editor; S.V. Medaris, designer/illustrator; Yilang Peng, project assistant; David J. Tenenbaum, feature writer; Amy Toburen, content development executive