Organizations are taking bigger steps in raising the chances of a match for those in need of bone marrow transplants (BMTs). Raising the availability of BMT donors has taken a route through the legal system.
In October, the Institute of Justice represented organizations like MoreMarrowDonors.org. Its lawsuit, Flynn vs. Holder, filed in federal court in Los Angeles, challenges the National Organ Transplant Act’s ban on compensation for bone marrow donors.
The ban prohibits compensating donors.
Jeff Rowes, the lead attorney, believes that some types of compensation would alleviate the pressures of a patient finding a match.
“This is important because it gives an extra incentive for people to sign the national registry and stay in touch,” Rowes said. “NOTA was enacted in 1984, so it is out-of-date with today’s medical standards.”
If the case prevails, MoreMarrowDonors.org will be allowed to compensate donors with a $3,000 scholarship for college students, housing allowance or gift to the donor’s favorite charity.
Rowes believes overturning the ban and allowing donors to be compensated, would be more practical for those who work, are in school or have a family.
A bone marrow transplant procedure replaces the sick patients’ stem cells with healthy stem cells. It is the best available cure for rare diseases such as leukemia and aplastic anemia. Medical science has been performing BMTs for the last 30 years, but not having sufficient resources for the procedure continues to be an issue.
According to the National Marrow Donor Program, there are three sources available to claim these stem cells from the donor: bone marrow, peripheral blood and cord blood. When a patient is unable to be saved by a sibling or relative, a stranger from the national registry is the only chance for a match. The number of successful matches will rise if the database of donors grows larger.
A 2001 MIT study said a donor has a 1 out of 20,000 chance of being a match with a stranger. Of the 3.5 million registered donors, 12.2 percent are Asian/Pacific Islanders, 8.8 percent are African-Americans and 2.6 percent are Hispanic. Although this study does not show the growth of the registry in the last eight years, it represents the need for donors among minorities.
Angela Kott, a resident in Cameron Park, experienced the difficulties of not finding a match. Three years ago, her son, Trevor Kott, was diagnosed with congenial acute myeloid leukemia the day after he was born. Her family was unable to find a match in time and Trevor passed away six months later. This tragedy inspired Angela Kott to get involved in raising awareness.
“My responsibility is to educate people, and make them more aware, to show how simple it is to register and act when called on,” Kott said. “Raising awareness will hopefully lessen the devastating conditions of a patient unable to find a match.”
Kott, who has helped recruit approximately 15,000 people to the national registry, also believes the obstacle of finding more matches is a result of how BMTs have been “Hollywoodized.”
“There is a misconception caused by the public’s lack of knowledge,” Kott said. “BMTs are usually portrayed to look painful and dangerous.”
Kott said that on one hand, compensation is not unreasonable since the donor makes a commitment that takes a lot of energy. Still, she would like to see a greater effort towards the removal of registration fees because medical coverage is already offered if a donor is declared a match.
“We don’t want people to start to sell off their stem cells for the wrong reasons,” Kott said. “Saving a stranger’s life should be enough of a reward.”
The Nolta Lab, part of the UC Davis Health System, specializes in stem cell research and examines the rare chance of finding a match.
Dr. Jan Nolta said that donors should not let fear drive them away and is confident in the field’s research. She said that bone marrow is a renewable resource in the human body, and as it replenishes, it is not the only alternative to stem cells obtained through the donor database.
Dr. Nolta believes that BMTs need more funding, but the best option would be to integrate cord blood banks across the nation. Umbilical cord blood is obtainable after birth, from the placenta, and contains stem cells that can be used in BMTs. Currently, most cord blood is not banked, goes to waste or is harvested by a private company.
On Nov. 17 and 18, Bloodsource will hold a blood and bone marrow drive at Freeborn Hall.
MICHAEL STEPANOV can be reached at email@example.com.