Arlington, Va.—Every year, nearly 3,000 Americans die because they cannot find a matching bone marrow donor. Minorities are hit especially hard. Common sense suggests that offering modest incentives to attract more bone marrow donors would be worth pursuing, but federal law makes that a felony punishable by up to five years in prison.
That is why on October 28, 2009, adults with deadly blood diseases, the parents of sick children, a California nonprofit and a world-renowned medical doctor who specializes in bone marrow research joined with the Institute for Justice to sue the U.S. Attorney General to put an end to a ban on offering compensation to bone marrow donors.
The National Organ Transplant Act (NOTA) of 1984 treats compensating marrow donors as though it were black-market organ sales. Under NOTA, giving a college student a scholarship or a new homeowner a mortgage payment for donating marrow could land everyone—doctors, nurses, donors and patients—in federal prison for up to five years.
NOTA’s criminal ban violates equal protection because it arbitrarily treats renewable bone marrow like nonrenewable solid organs instead of like other renewable or inexhaustible cells—such as blood—for which compensated donation is legal. That makes no sense because bone marrow, unlike organs such as kidneys, replenishes itself in just a few weeks after it is donated, leaving the donor whole once again. The ban also violates substantive due process because it irrationally interferes with the right to participate in safe, accepted, lifesaving, and otherwise legal medical treatment.
Jeff Rowes, a senior attorney with the Institute for Justice, said, “The only thing the bone marrow provision of the National Organ Transplant Act appears to accomplish is unnecessary deaths. A victory in this case will not only give hope to thousands facing deadly diseases, but also reaffirm bedrock principles about constitutional protection for individual liberty.”
This is the first time NOTA has ever been the subject of a constitutional challenge.
Doreen Flynn, a single mother of five children from Lewiston, Maine, joined with the Institute for Justice in filing suit. She is a compelling example of the courage and determination parents must exhibit when their children are struck with a deadly blood disease. Three of Doreen’s daughters have Fanconi anemia, a serious genetic disorder whose sufferers often need a bone marrow transplant in their teens.
Flynn said, “Saving lives through bone marrow donations starts with donors. Without them, the only outcome for those in need is death. We should do everything reasonable within our powers to encourage people to donate. The government must recognize the reality of those facts and stop standing in the way.”
Joining Flynn in the lawsuit is Dr. John Wagner, an internationally recognized expert in marrow cell transplantation at the University of Minnesota. He has treated thousands of patients in need of marrow transplants, and he has been forced to watch hundreds of them die after they were unable to find a matching donor. He believes it is time to try the most promising strategy for bringing in more donors—providing potential donors with an incentive to donate.
Dr. Wagner said, “No one questions the science behind marrow donations. The only question is why we don’t try compensation. We can demonstrate through a pilot program that compensation can be offered in a safe and ethical way. Although compensation will be used to encourage bone marrow donations, because of the science involved and the rarity of finding a bone marrow match, there won’t actually be a ‘marketplace’ for donors.”
This promising strategy will actually be carried out by MoreMarrowDonors.org, a California nonprofit corporation that educates the public about the need for more marrow donors. MoreMarrowDonors.org also intends to compensate marrow donors in order to increase the amount of available donor marrow.
Shaka Mitchell chairs the board of MoreMarrowDonors.org. He is of African-American and Puerto Rican heritage. Shaka joined this fight to ensure that more patients, especially minorities and people of mixed race, can find the donors they need.
Mitchell said, “The fight against deadly blood diseases usually takes place in the hospital, but now it has to be fought in court, too. We hope to improve the lives of countless Americans faced with life-threatening illnesses. Our goal is to implement a pilot program to determine the effectiveness of incentives.”
Akiim DeShay is also on the board of MoreMarrowDonors.org. He is an African-American leukemia survivor from Irving, Texas, who received a bone marrow transplant from his sister in 2004. Although she was a good match, he suffers from persistent medical complications and nearly died in February 2009. Akiim is an advocate for African-American bone marrow issues and runs a website called BlackBoneMarrow.com.
DeShay said, “As an African-American, I was especially troubled by the fact that my community is hardest hit. Marrow donation requires a very close genetic match between donor and patient. That means that it is even harder to find matching donors for people with diverse ancestry. Only 25 percent of African-Americans in need of an unrelated donor will find one.”
DeShay created BlackBoneMarrow.com as part of a local Dallas campaign to raise awareness in the African-American community about the critical need for African-Americans to join the bone marrow registry. He said, “I’ve met so many minorities who are facing death because they don’t have the opportunity for a lifesaving transplant. The only realistic way of making a dent in this problem is by trying financial incentives such as scholarships to attract more people into the donor pool.”
MoreMarrowDonors.org’s third board member is Mike Hamel. Mike is a Caucasian lymphoma patient in Colorado Springs, Colo. He recently underwent a transplant of his own stored marrow cells in an effort to avoid a transplant from someone else. He runs a blog called Open Mike (http://mikehamel.wordpress.com) that chronicles his daily battle with the disease.
Hamel said, “Desperate situations don’t call for desperate actions; they call for commonsense ones. A major reason for the chronic bone marrow donor shortage is that we don’t do one simple thing: compensate donors. Marrow donors are lifesavers. Finding a bone marrow match for me, if needed, would spell the difference between life and death. Cancer patients fight for life with everything we have and the last thing we need is an irrational government policy needlessly restricting our best medical options.”
IJ client Mark Hachey and his family live in Puyallup, Wash. Mark is Caucasian and his wife is of Filipino heritage. Their teenage son, Greg, who is multi-racial, is a leukemia survivor. Again, the more complicated someone’s gene pool is, the more difficult it is for them to find a bone marrow donor match. Greg had a mismatched transplant more than one year ago because there was no matching donor. Greg continues to experience serious medical complications as a result of his transplant.
Hachey said, “Doctors and patients have a right to do whatever it takes to save lives as long as they don’t hurt anyone else, even if that includes offering marrow donors some compensation for their time and effort. We are determined to help kids like Greg and make sure parents like me have every option on the table when it comes to beating cancer.”
Kumud Majumder and his family are of Indian descent and live in Saddle River, N.J. Kumud’s 11-year-old son, Arya, has leukemia and underwent a transplant from an unrelated donor in April when a matching donor was identified at the last moment. Arya continues to suffer medical complications from his transplant.
Majumder said, “Because our son could not find a perfect bone marrow donor match, we had to rely on a near match, but as a result, he has suffered from a series of secondary complications and has been hospitalized for an extended time. And we may have more difficult times ahead because we don’t know if a perfect match can be found for our son should he need another donation. If a closer donor match had been available, he could have avoided so much of the pain and sickness he has endured. Deepening the donor pool through incentives to attract more multi-racial donors would help ensure that others don’t have to suffer the way my son has suffered.”
Chip Mellor, president and general counsel of the Institute for Justice said, “Bad things happen when the federal government exceeds its constitutional authority. In this case, people actually die. The Institute for Justice intends to stop that and to restore constitutional constraints that prohibit arbitrary limits on individual liberty.”