IJ client Akiim DeShay seeks a bone marrow donor match, but a federal law has hampered that search. Thanks to a recent federal appeals court victory by IJ, a pilot program designed to attract more bone marrow donors may now start moving forward.
This decision will enable IJ client MoreMarrowDonors.org to move forward with its plan to create a pilot program to determine whether the compensation of marrow-cell donors will lead to more and better transplants for the thousands of people now searching for a donor. Thousands of Americans die every year awaiting a compatible donor.
Matching patients and donors is extremely difficult because of the deep genetic compatibility necessary for the transplant to work. Only 30 percent of patients will have a compatible donor in their family. The rest must turn to a national registry of potential donors, which, despite having the genetic profiles of several million people, frequently cannot match patients with ready, willing and able donors.
The odds are particularly bad for minority donors, including people of mixed racial heritage. African-Americans, for example, will find a matching donor on the registry only about a quarter of the time.
MoreMarrowDonors.org’s hope is that strategic compensation will induce more people to join the registry and, perhaps more importantly, induce them to go through with donation if ever asked.
Consider the tragic story of Penny Lindenberg. The married mother of two young girls was diagnosed with leukemia but had no matching marrow donor in the family. There were four matching donors on the registry, but none was willing or available to go through the safe, but uncomfortable, donation procedure. Penny died last year, and her husband Brian said of the matching potential donors’ refusal to step forward, “Now I have two girls at home without a mother, and lots of lives are ruined.” Who can doubt that Penny’s chances of persuading a donor to save her life would have been higher had she been able to compensate the donor for time and inconvenience?
This victory is a tribute to our clients, many of whom—either as the parents of sick children or as a leading bone marrow doctor—have a lot at stake in challenging the status quo. We want to acknowledge the special courage of the Majumder family, whose beloved 11-year-old son Arya died of his leukemia a few months after we launched the case. Arya, who attended the launch in Washington, D.C., in October 2009 while in remission, was an inspiration to all of us and his family never wavered in their support of our effort after Arya’s passing in early 2010 when his cancer returned.
Although we won a major victory, along with significant and positive media attention from news outlets across the nation, the fight may not be over. On January 17, 2012, the Attorney General filed a petition requesting that the full 9th Circuit rehear the appeal and overturn the decision of the three-judge panel. Rehearing is very rare and we do not expect the court to grant the Attorney General’s petition. If rehearing is granted, however, then the case will be re-briefed and reargued. If rehearing is denied, then the Attorney General may seek review in the U.S. Supreme Court, which may give us the opportunity to vindicate the principles of liberty in the highest court in the land.
This past December’s victory is a vindication for IJ’s high-stakes litigation strategy, and we will use the same passion, purpose and calculated risk-taking to defend freedom—for our clients, for people like Penny Lindenberg and Arya Majumder, and for thousands of others whose names we will never know. That is the IJ way.
Jeff Rowes is an IJ senior attorney.