To help increase the number and diversity of people in the National Marrow Donor Program’s bone marrow registry, the North Shore-LIJ Health System hosted a drive on December 7 at Cohen Children’s Medical Center (CCMC) for people to sign up for the registry.
Though 16-year-old Carly Nieves did not need a bone marrow transplant, her treatment course could have required one. This led Carly and her mother, Lisa Horner, to become bone marrow registry advocates. Carly was diagnosed with Pre-B Cell Acute Lymphoblastic Leukemia in 2003 and, despite completing two and a half years of chemotherapy, suffered a relapse in 2008. At that time, her option was to either receive another long course of chemotherapy or to undergo a bone marrow transplant; Carly opted for the chemotherapy.
“She was a lot luckier than some to have had the choice between having chemotherapy and a bone marrow transplant,” Horner said.
Ms. Horner is on the bone marrow registry and regularly encourages others to sign up, which involves having one’s cheeks swabbed.
“People are so misinformed when it comes to what’s involved to get on the bone marrow registry,” Horner said. “They think that there is a lot of pain involved. I think it takes longer to fill out the paperwork than it takes to get your cheeks swabbed.”
The bone marrow drive was co-sponsored by CCMC and the Icla da Silva Foundation, which was created in 1992, one year after its namesake, a 13-year-old Brazilian girl who said she wanted to create a foundation to help children find their donors, lost her battle with leukemia after not finding a match herself.
The foundation is now the largest nonprofit donor recruitment organization and is responsible for adding about 40,000 donors a year to the registry. But what’s perhaps closest to the heart of Airam da Silva, the foundation’s president and Icla’s brother, is that 35,000 of those donors each year are from racial minorities, an underserved population in the bone marrow registry. Of the approximately 10 million people currently in the registry, about 800,000 of them are Hispanic, da Silva said.
“Leukemia affects everyone,” da Silva said. “Don’t wait until it affects you and your family to get involved.”
Joel Brochstein, MD, associate chief for cellular therapy at CCMC, said typically people find the best bone marrow match from within their own ethnic and racial group; donors who wish to donate stem cells through the registry must be between 18 and 44 years of age.
The stem cell donation process can be done in one of two ways, he explained – by removing bone marrow from the donor’s hip while under general anesthesia, which is an outpatient procedure that can be done in about 45 minutes, or through two intravenuous lines that connect to a machine which retains stem cells which circulate in the blood stream. Approximately 20 to 30 bone marrow transplants are done at CCMC each year, Dr. Brochstein said.
“I was in the registry, myself, for a good number of years but I was never asked to donate,” Dr. Brochstein said. “I often felt jealous of those volunteers from whom I was asked to harvest marrow because of the tremendous feeling of satisfaction they experienced from being a good Samaritan.”
Carly summed up the reason to be a potential bone marrow donor by saying, “You’re being their hero.”
For questions about joining the bone marrow registry, call the North Shore-LIJ bone marrow transplantation center at 718-470-3460.