As a parent of two AML Leukemia kids, I have been frequently visiting the Texas Children’s Hospital in the last 10 years. My son Jerry was diagnosed with AML Leukemia in 2012. He was lucky to find donors and had two bone marrow transplants in 2012 and 2013. My daughter Lillian was also diagnosed with AML Leukemia in 2020. Partially due to COVID-19, she has not found a matching donor. So, my wife and I have been actively working with be-the-match, DKMS, Leukemia and Lymphoma society and many other charity groups and churches to host donor drives.
In this blog, based on the responses to a donor education survey we created, I want to tell the public that bone marrow donor registration and donation are much easier and less risky than you might have thought of. For those reading this article, please join or invite your friends to register as a bone marrow donor at join.bethematch.org/Lillian . There are on-line as well as touchless on-site donor drives which will not put you in the risk of COVID-19 infection.
70% of White Americans can find matching donors. But, only 40% of Asian Americans and 25% African American can.
While serving as a volunteer in some donor drives, I came to realize many surprising myths about bone marrow registration and donation. We created a donor education survey which contains 10 FQA posted on the be-the-match, such as “how rare do you think the blood cancers are”. We have collected 636 responses (as of the date of writing this blog), and the average score is only 4.5 out of 10! I.e. ordinary Americans only answer correctly half of the 10 questions. The image below is the statistics of the survey analyzed by the google form:
Stop here, before you continue to read the rest of this article. I would highly recommend (or challenge) you to first try our 5-minute survey to see whether you can score above the average Americans and answer more than 5 questions correctly from the total 10 questions. The link is donor4Lillian.com/survey .
1. How rare do you think the blood cancers are?
Each year in the USA, 10% of new cancer cases are blood cancers, with estimated 20,000 new blood cancer patients. An estimated 1 million people in the USA are living with or in remission from blood cancers.
2. How dangerous do you think is the Leukemia?
There are many types of Leukemia. 90% of kids diagnosed with ALL (Acute Lymphoma Leukemia) can be cured. The five-year survival rates for some type of Leukemia, e.g. AML (Acute Myeloid Leukemia), are still 30% or lower. Below is an overall historical survival rates of Leukemia. Both my son Jerry and daughter Lillian were diagnosed with AML.
3. How possible can patients find matching bone marrow donors?
In the USA, 77% of White Americans can find matching donors, but only 40% of Asian Americans and 25% of African Americans can find matching donors. So we need to encourage more minorities to register as marrow donors, since the patients can only find matching donors from the same ethnic group.
4. How to register as a marrow donor?
Registering as marrow donor is easy: simply swab your cheek and mail back the saliva sample.
5. How much does it cost to register as a marrow donor?
Registering as marrow donors are free for adults between 18 and 45 (or 60 sometimes). Older people need to pay $100 to register, and usually Doctors will only choose donors below 45 or even 35 so that the patients will have better survival rates.
6. What is the commitment of a donor?
Though donors are encouraged to have strong commitments as this will save a people, donation is totally voluntary. A donor can even change mind in the last minute before the donation without any worry or pressure. The following shows how one can save a patient, from registration to donation:
7. Who is not qualified as marrow donor?
A person must be at least 18 to donate because donation is a medical procedure and the person must be able to give legal informed consent. Also, because it’s a voluntary procedure a guardian or parent can’t sign a release or give consent for someone under age 18.
The following categories of people are also NOT qualified as marrow donors: People who are 60 years old; Diabetes requiring insulin or injectable medication; Multiple concussions or head injuries; History of heart surgery or heart disease.
8. How to match donors with patients?
For blood stem cell and bone marrow transplants, what matters is the best possible match between the human leukocyte antigen (HLA) tissue characteristics from the donor and patient. A perfect match is very complicated to find. We usually say a 9/10 or 10/10 match is a good match.
9. How does the donor actually donate bone marrow?
Bone marrow donation is quite safe since the donor often only donates the stem cells. And in most cases, marrow donation does not donate marrow directly. 80% of marrow donors donate marrow via a non-surgery procedure called Peripheral Blood Stem Cell donation (just like blood donation). The other 20% of donors will donate marrow from their hip bone (not from the backbone) to reduce the risk to a minimum.
10. Myths and facts about bone marrow donation
We need more marrow donors. Only 2% of the U.S. population registered as marrow donors.
All the marrow donors in the USA are automatically covered through the National Marrow Donor Program Donor Policy which includes medical, disability, and life insurance. This policy covers donors for all donation related activities as well as travel to and from any donation related activities. If your employer does not provide paid time off for donation, marrow registry institutes such as DKMS will provide a financial assistance program for lost wages compensation. Besides, all the travel expenses will be reimbursed as well.