May 1, 2021
The Honorable Lauren Boebert
1609 Longworth House Office Building
Washington, DC, 20515-0603
Phone: (202) 225-4761
Dear Representative Boebert:
I am writing in response to your recent decision to oppose a bill that would reauthorize the National Marrow Donor Program (NMDP), The TRANSPLANT Act, bill H.R.941. I write as a voter in your district, but also as a mother who had a child in cancer treatment and as an advocate for childhood cancer research. I was initially shocked that the congresswoman from my home district would vote against a life-saving program for cancer patients, but as I read your explanation, I realized that you might not be informed of the significance of the program. I am reaching out to you to give you a perspective you most likely did not have, and I am confident that if you did you would have been an advocate for the National Bone Marrow Registry, not an opponent.
Once after speaking at a fundraising event for childhood cancer research, a mother told me the heart-wrenching story of her son who was diagnosed at age seven with leukemia. He initially responded well to chemotherapy, but two years into his treatment the cancer returned. When a child relapses during leukemia treatment, they need a bone marrow transplant or they will die. Time is crucial in these cases because leukemia cells proliferate at an incredibly fast rate.
This mother turned to her family and relatives for a donor, but unfortunately none of them matched. In fact, only 30% of patients needing a transplant have a family member that matches. The remaining 70% require an unrelated donor as a transplant source. The NMDP had one person in the registry that was a match for her son. This mother, her little boy, their family, and their entire community were overjoyed.
The day arrived for the transplant. Her son was admitted to the hospital and prepared for the procedure. They waited for the donor to be ready as well, but to their unimaginable disappointment the donor never showed. The only donor that matched her son’s bone marrow decided not to go through with the procedure at the last moment. This mother begged doctors to let her know who the donor was. She wanted to offer her home, her car, anything she had. But in this case, the donor wanted to remain anonymous. Her sweet little boy passed away shortly thereafter.
At the time she told me this, my son was barely one year into cancer treatment. Relapse was still a real worry, one that every parent with a child in leukemia treatment fears. If my son had relapsed, our only hope would have been a lucky match with a family member, or the life-giving registry of the NMDP.
The day after hearing this mother’s story, I ordered a Be the Match kit so that I could be on the registry of the NMDP. It is estimated that the odds of any two people being a match are 1 in 20,000. If many more people joined the registry, there would have been more than one option for this mother and her son.
Thousands of Americans each year, including some in your own district, benefit from the registry, but there are still those that don't find a match. It is crucial that more people register so that every person needing a bone marrow transplant has the best possible odds. It's equally crucial that more funding be set aside to promote and maintain this critical program.
As a mother yourself, I am sure you can imagine the heartbreak and frustration of this mother and her little boy. It is my hope that in your future votes you will support childhood cancer-related causes, and that you and your family will join the Be the Match registry yourselves if you have not already done so. You or one of your family members could save a child's life.
Great post Jess! I went to the site to register, and it seems that prospective donors must be between 18 and 44 years of age on the Be The Match registry. If you are older, the Gift of Life registry (giftoflife.org) will still list you, but there is a $60.00 donation to join that registry. It appears that 18-44 is the key age range for donations, since their tissue offers the greatest chance of success.