Bone Marrow - Release: 2-15-2011


Compensating Bone Marrow Donors Could Save Lives But the Government Bans It

WEB RELEASE: February 15, 2011
Media Contact:
John E. Kramer (703) 682-9320


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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.

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Video: Saving Lives: Challenging the Ban on Compensating Bone Marrow Donors
Video: Press Conference October 28, 2009

Arlington, Va.—Every year, nearly 3,000 Americans die because they cannot find a life-saving bone marrow donor match—a trend that disproportionately impacts minorities.  But on Tuesday, Feb. 15, 2011, cancer patients from across the nation who can’t find a donor match will square off in court against the U.S. Attorney General seeking to strike down part of a federal law that bans anyone from offering even modest compensation to bone marrow donors.  If the cancer patients are successful in their suit, compensation could be offered to those who donate bone marrow, thus attracting more donors and saving more lives.

This video (appears above) explains the life-or-death legal battle:
http://www.youtube.com/watch?v=RMcXvMxVFUA

The court argument will take place at 11 a.m. on Tuesday, February 15, 2011, at the 9th U.S. Circuit Court of Appeals at the Richard H. Chambers U.S. Court of Appeals Building, Courtroom 3, 125 South Grand Avenue in Pasadena, Calif.  A press conference will be held at noon directly across from the courthouse where representatives from the Institute for Justice, who will argue the case, as well as two of the clients they represent, will discuss the argument and their hopes for the case.

Under the National Organ Transplant Act (NOTA) of 1984, giving a college student a scholarship or giving 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 (such as kidneys) instead of like other renewable or inexhaustible cells (such as blood) for which compensated donation is legal.  Unlike organs such as kidneys, donated bone marrow replenishes itself in just a few weeks after it is donated, leaving the donor whole once again.

Institute for Justice Senior Attorney Jeff Rowes said, “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, will attend the court argument and press conference.  Majumder 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.”

Read Kumud’s USA Today feature here:  http://www.usatoday.com/news/opinion/forum/2011-02-09-majumder11_st_N.htm.


Also attending both the argument and the press conference will be Akim DeShay, who said, “I sit on the board of a nonprofit group, MoreMarrowDonors.org, that wants to help the most-needed donors—especially minorities—with modest financial compensation in exchange for providing their lifesaving marrow.  This will encourage people to join the registry and go through with donation when they’re called.  Right now half of all donors back out when it’s time to donate.”

DeShay said, “Only two percent of Americans have joined the national bone marrow registry, and there is a chronic shortage of African-American donors.  Being African-American, there was only a 25 percent chance I would have a donor in the registry.”

Donating marrow is safe and more than 40,000 people have donated bone marrow without a single donor death.

The families first filed suit in October 2009.


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