Bone Marrow - Release: 12-1-2011
Cancer Patients Win Bone Marrow Legal Fight Against U.S. Attorney General
Cancer Patients in California and Elsewhere May Now Offer Modest Compensation for Bone Marrow Donors
Nearly 3,000 Americans Die Each Year Waiting to Find a Bone Marrow Donor Match, Minorities Hit Hardest by Lack of Donors
WEB RELEASE: December 1, 2011
John E. Kramer (703) 682-9320
Doreen Flynn, a single mother of five children from Lewiston, Maine, 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.
|Video: Saving Lives: Challenging the Ban on Compensating Bone Marrow Donors
|Video: Case Launch Press Conference October 28, 2009|
Arlington, Va.—The Ninth U.S. Circuit Court of Appeals today issued a unanimous opinion granting victory to cancer patients and their supporters from across the nation in a landmark constitutional challenge brought against the U.S. Attorney General. The lawsuit, filed by the Institute for Justice on behalf of cancer patients, their families, an internationally renowned marrow-transplant surgeon, and a California nonprofit group, seeks to allow individuals to create a pilot program that would encourage more bone-marrow donations by offering modest compensation—such as a scholarship or housing allowance—to donors. The program had been blocked by a federal law, the National Organ Transplant Act (NOTA), which makes compensating donors of these renewable cells a major felony punishable by up to five years in prison.
These videos explain the life-or-death legal battle:
Under today’s decision (PDF Download), this pilot program will be perfectly legal, provided the donated cells are taken from a donor’s bloodstream rather than the hip. (Approximately 70 percent of all bone marrow donations are offered through the arm in a manner similar to donating whole blood.) Now, as a result of this legal victory, not only will the pilot programs the plaintiffs looked to create be considered legal, but any form of compensation for marrow donors would be legal within the boundaries of the Ninth Circuit, which includes California, Alaska, Arizona, Hawaii, Idaho, Montana, Nevada, Oregon, Washington and various other U.S. territories.
“Every year, nearly 3,000 Americans die because they cannot find a matching bone marrow donor, but the federal government has made it illegal to do the one thing that will make finding donors easier: paying them,” explained Institute for Justice Senior Attorney Jeff Rowes, the lead lawyer on the case. “Today’s decision will put a stop to this irrational prohibition, and it could save thousands of lives in the process.”
Originally adopted in 1984, NOTA was designed to prohibit compensation for human organs like kidneys, but not to affect compensation for renewable tissues like blood. Unfortunately, the statute’s definition of “organ” includes “bone marrow”—even though “bone marrow” transplants do not involve any nonrenewable organ, but are instead simply transfusions of renewable blood cells that donors regenerate in a matter of weeks. The lawsuit, filed in 2009, argues that NOTA’s prohibition on compensating marrow donors is irrational because “bone marrow” is the only renewable tissue for which compensation is banned.
Recruiting bone marrow donors is particularly important because marrow donations, unlike blood donations, require an incredibly close genetic match. Not only does this mean that finding a matching marrow donor is more difficult, but it means the shortage of marrow donors is especially severe for many racial minorities. An African-American, for example, has only about a 25 percent chance of finding an unrelated donor. MoreMarrowDonors.org, a California nonprofit corporation that was a plaintiff in the suit, wants to help improve things by offering targeted financial incentives, like a $3,000 scholarship or a $3,000 gift to the charity of a donor’s choice, to people who have the most-needed types of marrow.
“The simple fact is that bone marrow is not an organ, and it makes no sense to treat the same procedure—taking blood from a patient’s arm—differently simply because someone is donating marrow cells instead of other blood cells,” said Robert McNamara, an Institute attorney. “By engaging with those facts, despite the government’s urging that the court ignore them, the Ninth Circuit did exactly what courts are supposed to do—these judges judged.”
A lower court had dismissed the lawsuit last year, but the Ninth Circuit, in a unanimous opinion written by Judge Andrew Kleinfeld, reinstated the lawsuit and found in favor of the plaintiffs. The court’s opinion, however, did not reach the core constitutional issues in the case. Instead, it decided it did not need to reach the Constitution because NOTA should not be interpreted to prohibit what the plaintiffs want to do. The court interpreted NOTA’s prohibition on compensating “bone marrow” donors as only reaching situations where doctors take actual bone marrow (the spongy tissue inside of bones) from donors—and not reaching the most common modern form of bone marrow donation, where doctors use a technique called apheresis to take marrow cells out of a donor’s bloodstream through their arms in a fashion similar to donating blood.“The statute does not prohibit compensation for donations of blood and the substances in it, which include [marrow cells],” concluded the opinion.
“Today’s opinion is a victory for common sense and for cancer patients everywhere,” said Institute for Justice President and General Counsel Chip Mellor. “No one should go to prison for simply trying to save a life.”
Joining MoreMarrowDonors.org 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. Among the other plaintiffs are Doreen Flynn, a single mother from Maine who has three daughters with Fanconi anemia, a genetic condition that often requires a bone-marrow transplant; Akiim DeShay, an African-American leukemia survivor from Irving, Texas; Mike Hamel, a Caucasian lymphoma patient in Colorado Springs, Colo.; Mark Hachey, who is of Caucasian and Filipino heritage from Puyallup, Wash.; and Kumud Majumder, a Saddle River, N.J., resident who in 2010 lost his only son Arya to leukemia.
In the wake of today’s decision, the Attorney General has the right to seek further review in the U.S. Supreme Court or from the full Ninth U.S. Circuit Court of Appeals sitting en banc. If the Attorney General does not obtain further review, the case will be remanded to the trial court for entry of a final order and MoreMarrowDonors.org will implement its planned program of compensation.
Rowes concluded, “This case isn’t about medicine; everyone agrees that bone marrow transplants save lives. This case is about whether individuals can make choices about compensating someone or receiving compensation for making a bone marrow donation without the government stopping them.”
Kumud Majumder, the father of 11-year-old Arya, who died last year as a result of not finding a bone marrow donor match, said, “Arya’s tragedy happened in part because of a lack of bone marrow donors. This is largely avoidable and the shortage of donors is made worse by a federal law that I and other families of cancer patients are fighting in federal court. In the end, creating more and better bone marrow donor matches through a system of modest compensation will save the lives of patients, improve the lives of donors, drive down the costs of treatment and improve the quality of life of cancer patients as they battle to survive.”
This victory is among the biggest for the Institute for Justice, which this year celebrates its 20th year of litigating for liberty. The Institute for Justice has a well-established track record of taking on difficult legal fights on behalf of various Davids against the government Goliath. Despite having an uphill legal fight in each of their cases, IJ has still managed to win more than 70 percent of the cases it has litigated, either through an outright victory in the court of law, legislative reform or in the court of public opinion.