On June 5, 2013, federal judge Michael Baylson in Philadelphia made national news when he issued a temporary restraining order directing Secretary of Health and Human Services Kathleen Sebelius and the federal organ allocation system to disregard the age of Sarah Murnaghan (then ten) for purposes of allocating new lungs she needed to live. Sarah got that new set of lungs and lived. So did Javier Acosta, another child I represented with a team of lawyers from my former law firm, Pepper Hamilton LLP.
Tragically, a lot of people waiting for organs aren’t so lucky.
Last year at this time, I represented ten year-old Sarah Murnaghan, then a patient in the ICU at the Children’s Hospital of Philadelphia, in a highly unusual lawsuit in federal court. Sarah suffered from end stage lung failure and Cystic Fibrosis. I led a team of lawyers that challenged the federal “Under 12 Rule” of the organ allocation system and on June 5 and 6, 2013, secured temporary restraining orders for both children in federal court. The TROs required the children to be treated as if they were 12 years old for purposes of lung allocation.
A few days later, on June 10, 2013, the Executive Committee of the Organ Procurement and Transplantation Network (OPTN), which runs organ allocation, decided to change the Under 12 Rule to permit exceptions in special cases. Both children have since had lung transplants and, thankfully, are alive today. (Read news coverage of the case and listen to a transcript of the TRO hearing here on my web site.)
In fact, both children are doing amazingly well. One year ago they were in bed dependent on ventilation to breath and, in Sarah’s case, weeks away from death. Javier was not quite as sick as Sarah but he too would have died without new lungs, and he has the memory of an older brother, Jovan, also a CF kid, who died waiting for a lung transplant in 2009. Today both Sarah and Javier breathe on their own. They are completely mobile and getting ready to rejoin their classes at school in the fall.
I re-lived the case on May 16, 2014, as a speaker at the Health Policy Institute sponsored by Southern Illinois University in Carbondale, Illinois. The other speakers included Stuart Sweet, M.D., a pediatric pulmonologist from St. Louis and the Secretary of the OPTN. Dr. Sweet was directly involved in Sarah’s case and offered the compromise solution that resolved the case at the OPTN and ultimately helped Sarah to get lungs.
The title of the program was From Critical Shortage to Critical Mass: Addressing the Lack of Organ Donors.The conference opened with a presentation by Dean Kappel, President/CEO of Mid-America Transplant Services, a high-performing organ procurement organization that serves the St. Louis area, one of 58 such non-profit organizations in the United States.
Dean reported the bad news. Every day eighteen people in the United States die waiting for organ transplants.
The statistics are sobering. For the past ten years, the number of donors of all organs has stayed flat in the 14,000 range annually. The number of people on the waiting list for kidneys alone has risen from the high 20,000s to the high 30,000s with another 10,000 people annually waiting for livers, and more than 7,500 people waiting for hearts, lungs, and other organs.
The problem is most acute with kidneys. The federal government funds the cost of dialysis for patients suffering from end stage renal disease to the tune of more than $34 billion a year. More people staying alive on dialysis means more people waiting for kidneys, which is why, of the eighteen who die every day, fourteen die waiting for kidneys. That’s a lot of misery.
Organ shortage isn’t the only problem. The organ allocation system overall works very well, but there are some problems, as Sarah’s case illustrated. One known problem results from the regional approach to allocation, with organs allocated preferentially within the region where the donation took place. With the regional system it’s possible for an organ to be given to a less sick person in region while a far more sick person just over the border dies; it’s been known to happen and it violates the governing federal regulation that mandates that organs be allocated based on medical urgency. Admittedly, some sort of regional approach is necessary because organs don’t last long and need to be used quickly, but hard and fast cutoffs are difficult to justify.
Another problem with the regional approach is the great disparity in organ donation and recovery by region. Some regions including New York City and Long Island have very long waiting times compared to other areas of the country, and the regions with better results prefer not to change the system.
What to do? Well, the system has got to improve. But how to address the most basic problem — the shortage of organ donations? Economist Randy Beard of Auburn University has a new book called The Global Organ Shortage: Economic Causes, Human Consequences, Policy Responses (Stanford University Press 2013). At the conference, Randy argued for a carefully-structured compensation system, with rigorous vetting of candidates, a six-month waiting period, and back-loading of compensation. In the United States, any type of compensation system, even one that provided money for funeral benefits for a deceased donor, would require congressional approval, because the National Organ Transplant Act of 1984 prohibits any consideration in exchange for donated organs.
Another alternative is to increase donor registration through social media. Most people today become organ donors when they register to drive. While that approach has proved successful to a degree, the numbers seem to have topped out, with very high donor registration rates in some areas but not others. Andrew M. Cameron, M.D., a surgeon at Johns Hopkins, reported on the Facebook Organ Donor initiative, which provides easy online organ donor registration with alerts going out to Facebook friends. Dr. Cameron acknowledged that social media is one avenue for progress in organ donation, but it’s not enough.
The consensus of the speakers and the audience in discussion was that the problem of procuring sufficient organs to meet the growing need is going to require much greater societal awareness, more study, and probably action from Congress. For now, progress in transplantation science seems to be outstripping our ability as a society to procure organs.