Amit Gupta has until the end of November to find a life-saving bone marrow donor, and his friends are willing to pay. The campaign, called Amit Gupta Needs You, was started by Gupta himself and his social-media-savvy friends. Their plea for marrow has swept across the web via Tumblr, Twitter, and Facebook, gathering hundreds of new potential marrow donors along the way.
Some news stories have said that Gupta, who has been diagnosed with acute myeloid leukemia, has a 1 in 20,000 chance of finding a perfect match because he is of South Asian descent. While the odds aren’t quite so dire, according to the National Marrow Donor Program, only 1.8 percent of the marrow registry is South Asian.
ith these odds on the table, author and friend Seth Godin said on his blog that he would “gamify” the campaign by offering $10,000 to the first match to enter the registry and donate his or her marrow to Gupta. Michael Galpert, co-founder of Aviary, andJakob Lodwick, co-founder of Vimeo, matched Godin’s pledge in an effort to improve Gupta’s odds.
The pot now stands at $30,000. And the clock is ticking.
The campaign is helping. Hundreds of people are getting tested at “swab parties” and benefits like Wanted: Brown Bones in New York. As Godin writes, all you have to do to get tested is “get a Q-tip, stick it in your cheek and mail it back.”
And everyone is rooting for Gupta, the 32-year-old founder ofPhotojojo. But his sympathetic plight has thrown new light on the difficult questions that have always been part of the triage of donated organs and other spare human parts: It’s illegal to offer money for a transplant, but is it unethical? As things stand, do the rich and powerful — and connected — have an unfair advantage?
A Lottery In Which Everybody Wins
The late Steve Jobs didn’t pay for his new liver, but he did have the resources to travel to cancer centers around the country to place his name on transplant lists in multiple regions — not exactly paying for an organ, to be sure. But how much should fame, or wealth — or social media proficiency — be allowed to determine whether one patient gets a transplant over another?
Godin innocently straddled the line with his initial post but quickly amended it to say, “You win the prize if you’re the first certified match, but donating is completely up to you,” and, “If this still doesn’t pass muster, the prize goes to charity.” Legality, check.
And since there is no question the Gupta is a worthy candidate, how is the ethics of the situation affected by one worthy candidate’s better use of the tools than another — especially since the cash carrot few others can dangle benefits the donor pool at large and only may find Gupta the match he so desperately needs?
“From my perspective,” said Dr. Jonathan Benjamin of Stanford’s blood and marrow transplant division, “it’s about increasing the donor pool, and giving an under represented group a better chance.” The $30K challenge may have been aimed to attract one perfect match for Gupta (and will, in all likelihood, go to no one), but the money and Team Amit’s social media campaign have attracted hundreds of new registrants that would not have otherwise stepped up.
Further complicating matters is the seemingly ill-applied definition of what is and is not a finite or a renewable bio resource. Though they are lumped together by the federal statute, solid organ (e.g. kidney, liver, heart) and bone marrow registries operate differently. When Mickey Mantle, who was famously an alcoholic, waited just one day for a liver in 1995, many members of the transplant community were appalled because it appeared that his fame had allowed him to jump ahead in line. Because bone marrow has to be matched so exactly, there is no line. Gupta isn’t competing with other patients to find a match because donors can give marrow multiple times.
Donating marrow is less invasive than donating a solid organ. Most often, it is extracted from the arm — like giving blood for six hours. But while the procedure is less complicated than donating, say, a kidney, matching a marrow donor with a recipient is much more complicated. Solid organ donors, who are paired with recipients by blood type and availability of stem cells, don’t have to be a perfect match or even a good match — there is medicine that can prevent rejection now. But with bone marrow a match has to be much more precise. The donor for Gupta will have to be matched at a series of genes known as HLA, on Human Chromosome 6, said Dr. Benjamin. Essentially, the doctors are looking to match immune systems.
“There are 10 billion combinations, more than people on earth,” said Dr. Jeoffrey Chell, CEO of Be the Match and the National Marrow Donor Program. Gupta’s odds are relatively low because immune systems are more likely to correspond to the region of a patient’s heritage, not where they live today — this is why family members are only matches 25 to 30 percent of the time. A long history of turmoil, colonization, and ethnic mixing in South Asia has bred a particularly wide range of HLA combinations that are very difficult to match.
Socializing Incentive-Based Donations
Gupta faces another setback: if a patient of Chinese descent can’t find a match in the U.S. registry, he or she could ask for help from China’s marrow program. South Asian countries, like India, do not have registries to draw from. Over the past four years, however, the South Asian community has responded by increasing their representation by more than 40 percent. “It’s like buying a lottery ticket,” said Moazzam Khan, who, along with his wife, runs the South Asian Marrow Association of Recruiters. “The more tickets you buy, the better chance you have of winning.”
Using social media to get the word out, Gupta’s friends are gathering more and more lottery tickets every day — hundreds of people have entered the registry since the campaign began, meaning there are hundreds of new potential donors for anybody who might need a transplant.
“I read this story and I think, this is great — they’re getting all of these people to register,” said Dr. Arthur Matas, director of the renal transplant program at the University of Minnesota. But, he said, you can’t argue for incentive-based organ donation in terms of one case.
“If I have a patient in front of me, my job, as a physician, is to do the best thing for that patient,” he said. “If I believe that patient is going to benefit from a transplant, then my role as a physician is to be an advocate to try and find as many organs as possible.” But, he said, unless the law is changed, he can’t promise a donor any kind of incentive for a solid organ or bone marrow.
Matas believes there may be a way to make incentive-based donation work, but first, it would have to be tested on a trial basis and, to do so, the federal statute has to be changed. Matas envisions a system in which the government, not the recipient, compensates the donor. For instance, if an altruistic donor offers a kidney to someone they’re not connected to (not a family member or friend), the government could reward the donor with health insurance or a college education. Or, if it were a monetary reward, the money could be distributed over a long period of time to prevent people who are just strapped for cash from donating. By de-linking the transaction, nobody can be accused of buying anything.
According to a 2009 poll, 60 percent of members of the American Society of Transplant Surgeons (ASTS), are in favor of a congressional bill that would allow living kidney donors to be rewarded with health insurance. This sort of reward is an appropriate incentive, according to a report published by the ASTS, because “it is a lifetime benefit to the donor, it cannot be traded or sold, and it prevents the disincentives of donation.”
Before a bill could be passed, said Dr. Matas, “you need to sit down and define all of the potential harms.” Does the system exploit poverty? Is it possible to get informed consent when there’s an incentive on the table? As Dr. Matas points out, it’s hard to see how an incentive-based model could take advantage of a donor if the reward is of value to them.
If medical professionals, politicians, and lawyers could work these questions out and pass the ASTS’s proposed bill, it could pave the way for reform across the board in organ and tissue donation.
For now, Gupta’s friends are doing all they can for him given current legal restrictions. Mantle and Jobs did the same thing. The difference is, you probably didn’t know who Amit Gupta was before his social media campaign began. But with his new-found celebrity, he and his friends are raising awareness and reaching an entire internet community of potential donors.
Team Gupta’s message is to be proactive, said Dr. Chell. Their Twitter and Facebook audience “can potentially help save Amit, but it is likely they will help someone else’s life.”