Bone Marrow - Release: 12-1-2011
Cancer Patients to U.S. Attorney General: Drop Bone Marrow Legal Fight & Save Lives
Nearly 6,000 Americans Died Waiting for Marrow Match While Legal Fight Raged over Compensating Donors
WEB RELEASE: December 6, 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.—Less than one week after scoring a landmark and unanimous federal appeals court victory, cancer patients from across the nation urged the U.S. Attorney General to drop his legal defense of a federal ban on compensating bone marrow donors. Nearly 6,000 Americans died in the past two years since the legal fight began, unable to find a bone marrow donor match, at least some of whom would have benefited from being able to compensate a matching donor. The longer the Attorney General prolongs the legal fight, the cancer patients pointed out, the more lives will be lost.
On Thursday, December 1, the 9th U.S. Circuit Court of Appeals unanimously ruled that cancer patients, their families, an internationally renowned marrow-transplant doctor, and a California nonprofit group, all represented by the Institute for Justice, could create a pilot program that would encourage more bone marrow donations by offering modest compensation—such as a $3,000 scholarship or housing allowance—to individuals who donate bone marrow. The program had been blocked by the Attorney General’s position that a federal law, the National Organ Transplant Act (NOTA), makes compensating donors of these renewable cells a major felony punishable by up to five years in prison.
The U.S. Attorney General has until February 29, 2012, to petition the U.S. Supreme Court to review the 9th Circuit’s decision.
Under last week’s decision, this pilot program is legal provided the donated cells are taken from a donor’s bloodstream rather than the hip bones. (The vast majority of bone marrow donations—approximately 70 percent—are offered through the arm in a manner similar to donating whole blood components, such as plasma or platelets.) As a result of this victory, not only will the pilot program the plaintiffs looked to create be legal, but any form of compensation for marrow donors would be legal within the boundaries of the 9th Circuit.
“The Attorney General should accept that compensating marrow donors is legal and that this will save thousands of lives in the long run. It should not ask the U.S. Supreme Court to review the 9th Circuit’s well-reasoned opinion,” said Jeff Rowes, an Institute for Justice senior attorney. “The longer the Attorney General prolongs this legal fight, the more lives will be lost among cancer patients who can’t find suitable donor matches. Allowing compensation for bone marrow donors poses no threat to public health and safety. Any legal defense of this ban essentially argues that it is somehow more rational for the government to let cancer patients die rather than give them a fighting chance to survive by finding a bone marrow donor match through this pilot program. For the government to say that is completely irrational and borders on the heartless.”
In its ruling, the 9th Circuit hinted that either Congress or the Department of Health and Human Services could expand the definition of “human organ” to include marrow cells drawn from a donor’s bloodstream, but, Rowes points out, any attempt to amend the definition of “human organ” would revive the same constitutional claim that the 9th Circuit determined that it need not address.
Rowes said, “As long as it is legal to offer compensation for other components of the bloodstream, such as red and white blood cells, plasma and platelets, making it a crime to provide compensation for marrow cells removed from the bloodstream is arbitrary. The equal-protection guarantee of the Fifth Amendment does not allow the federal government to make arbitrary statutory distinctions.”
IJ Attorney Robert McNamara summed up the central fault in the government’s ban on compensating bone marrow donors but allowing compensation for other blood parts: “The fact is that marrow cells circulating in the bloodstream are not an organ. The government can’t make these cells into a human organ by passing a law, any more than it could make a dog into a cat by passing a law. 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.”
None of the arguments raised by the Attorney General in support of prohibiting compensation for marrow donation stands up to scrutiny. For example, the Attorney General argued in court papers that compensation should be banned because permitting incentives might disproportionately benefit the wealthy. But this argument overlooks the fact that the primary obstacle to finding a marrow donor is finding a person in the national donor pool with the deep genetic match these donations require—a match that, in many cases, is literally a one-in-a-million shot. A person who is encouraged to join the pool of potential donors by the promise of potential incentives is just as likely to be a match for any patient, which means that expanding the donor pool benefits all who are in need of a match.
These videos explain the life-or-death legal battle:
For a copy of last week’s decision, click:
The most common arguments supporting the ban on compensation cannot be squared with the facts of the case. For example, some argue that allowing compensation will compromise the safety of bone-marrow donation by encouraging people to conceal infectious diseases or that compensation will somehow undermine the altruism-only system that is currently in place. But bone-marrow donors sign up to donate at least months if not years before any matching patient is found. Furthermore, donors are carefully screened before they donate. It is unthinkable that someone in need of quick cash would sign up to donate marrow in the hopes of receiving a cash payment when a donor is found—which could be months later, years later, or (most likely) never. Similarly, arguments that compensation would undermine altruistic donations miss the mark. “Common sense tells us that you get more of something when you pay for it,” explained Rowes. “And economists who have researched bone-marrow donation tell us the same thing should happen here.”
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.”