10 Myths and Facts About Bone Marrow Donation

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.

美国的亚裔骨髓库只有40%的匹配几率。注册只需要唾液样本,实际的捐献过程中80%是以类似献血的非手术方式进行的!

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.

美国每年都有接近两百万的新增癌症病患。而这新增癌症病人中有10%是白血病或类似的血癌。

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.

不同的白血病的治疗效果很不一样。小儿常见的ALL急性淋巴细胞白血病的治愈率可以达到90%,而较罕见的AML急性髓细胞白血病仍然只有30%左右。

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.

77%的美国白人可以找到匹配的骨髓捐献者,但是只有40%的亚裔美国人和25%的非裔美国人可以找到匹配的捐献者。

4. How to register as a marrow donor?

Registering as marrow donor is easy: simply swab your cheek and mail back the saliva sample.

注册加入骨髓库,只需要您的唾液样本就可以了。

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.

所有18岁至45岁之间的健康人都可以免费加入骨髓库。

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:

如果您的唾液样本匹配上了某一位需要骨髓移植的病人,您仍然有完全的隐私和权力可以随时终止并不会受到医生或病人的压力。当然,我们希望您能尽力帮助需要的病人。

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.

如果您不满18岁,您就不能注册捐献,因为这里有相关的法律规定,捐献者必须成年且能自己授权。如果您正在怀孕,您仍然可以注册,因为骨髓库或暂时屏蔽您的信息,当您过了怀孕和哺乳期,您的信息才会重新被激活并被匹配。

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.

如果匹配的方法是通过比对DNA中的HLA人類白血球抗原,通常10对HLA中,如果有9对或10对匹配,就认为是匹配的捐献者了。

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.

通常300个注册者中有一个会匹配上全国每年14000位等待骨髓移植手术病人中的一个。如果您匹配上了某一位病患,80%的骨髓捐献手术是通过PBSC周边血液干细胞捐献方式,很类似献血的形式。还有20%的骨髓捐献手术需要从尾椎骨中抽取干细胞,这需要局部麻醉,但是因为是从尾椎骨中抽取,所以风险非常低。

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.

全美国只有大约2%的人注册骨髓库。美国最大的骨髓库捐献登记机构是be-the-match,另外DKMS也是一个很大的全球性组织。

Please visit donor4Lillian.com to know more about donor registration. Please help us advocate donor drives by join.bethematch.org/Lillian or share our QR code:

Our two kids were diagnosed with AML leukemia. Our daughter Lillian has not found the matching donor. Please help us advocate donor drives @ Donor4Lillian.com