A proposed change to federal regulations covering bone marrow donations could cost some patients their lives.
The proposed regulation would declare bone marrow an organ and would allow the US Department of Health and Human Services (HHS) to ban the compensation of marrow donors. A federal law, the National Organ Transplant Act, makes it illegal to pay for donated organs.
If the regulation is implemented persons that pay others for bone marrow could face up to five years in a federal prison. In other words, HHS wants to make compensating individuals for donating a lifesaving substance a felony. That action, critics say, could lead to a serious shortage of bone marrow.
Turning donors into felons
“I don’t think that anybody should go to jail just for trying to save somebody’s life,” Doreen Flynn told Forbes. Flynn is the mother of three children who suffer from Fanconi anemia, a rare genetic disorder that leads to bone marrow failure. “If paying donors results in more marrow donations, we should pay them.”
The only chance three of Flynn’s children have to live to adulthood is to receive bone marrow donations. Yet the HHS is proposing a regulation that will go around a federal court ruling and possibly lower the supply of bone marrow.
Bone marrow is the substance in our bones from which blood is made.
Instead of using a long needle like in the past to obtain marrow, it is now possible to cure patients by taking small amounts of stem cells from a donor’s blood using a procedure called apheresis – a procedure that takes five days. (Note: This is different from the controversial embryonic stem cell research.) The cells produce marrow. But because the procedure takes nearly a full week, donors are hard to find.
Currently, the law allows doctors to pay men for sperm, donors for blood and plasma and women for their eggs. The standard procedure for bone marrow donation apheresis is far less invasive than removal of a woman’s egg, yet the HHS wants to recriminalize it.
Trying to overturn a landmark court ruling
Last year the federal 9th Circuit Court of Appeals ruled unanimously that bone marrow was not an organ and that compensation was allowed in some instances. The court was responding to a challenge to the ban brought by the Institute for Justice, Flynn and a charity called MoreMarrowDonors.org.
“Our hope is that compensation will induce more people to register as potential bone marrow donors,” Robert McNamara, an attorney at the Institute, said. MoreMarrowDonors wanted to give potential donors housing vouchers, scholarships and donations to charities.
McNamara thought his victory was complete when US Attorney General Eric Holder declined to appeal the 9th Circuit Court’s ruling to the US Supreme Court. Now the HHS is trying to do an end-run around the courts by changing the regulation.
Nightmare for mother continues
If it goes into effect the proposed HHS regulation would be a defeat for Doreen Flynn. One of Flynn’s children, daughter Jordan, recently had a bone marrow transplant.
Flynn’s two younger children, Georgia and Julia, also suffer from Fanconia anemia. They could die without a bone marrow transplant. Flynn thinks compensating donors might increase the supply of marrow and her daughters’ chances to live.
“The alarming fact that no one seems to talk about is that a huge percentage of match donors never follow through with their promise to help,” NBC news correspondent Dr. Nancy Snyderman said. She noted that around 50 percent of bone marrow donors fail to follow through with their promises.
Cases in which patients go to the hospital for the transplant and the donors never show up are common, Dr. John Wagner, chief of the bone marrow transplant program at the University of Minnesota, told NBC News.
It looks as if the HHS is determined to overturn a court ruling that could save lives.