About Bone Marrow Registration and Donation

For the Chinese version, click here 中文版  

One in 285 kids will be diagnosed with childhood cancer before age 20.  Despite major advances – from an overall survival rate of 10 percent just fifty years ago to nearly 90 percent today, for many rare cancers, the survival rate is much lower. Childhood cancer is not just one disease but made up of 12 major types with over 100 subtypes, so although some types of cancer have a 97% survival rate (Hodgkin Lymphoma) others have a survival rate of less than 1% (DIPG). The number of diagnosed cases annually has continued to increase over the past 20 years.  Sources: American Cancer Society

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. You can register either by texting Lillian at 61474 or online.

Top Question 1: How to register

Registering as a marrow donor is easy: simply swab your cheek and mail back the saliva sample. No need to draw blood or send in your skin sample.

Registering as marrow donors are free for adults between 18 and 44. 

Top Question 2: What is it like to donate bone marrow?

One in every 430 registered donors will be matched and actually go on to donate the bone marrow stem cells.

Is marrow donation risky?

Bone marrow donation is quite safe since the donor often only donates the stem cells.  Your body replaces the marrow that you give (like for blood).  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.

Is marrow donation painful?

In 70% cases of PBSC, it is least painful as it's very much like blood donation.  In the rest 30% cases, bone marrow donation will need anesthesia so they feel no pain during collection. Discomfort during recovery varies from person to person. Side effects may include back pain, fatigue, headache or bruising for a few days or weeks. Most donors feel completely recovered within a few weeks.

Most Common Myths and Facts

Only 2% of Americans have registered in the national marrow registry, so that more than half of the Asian and African American patients can not find matching donors. There are many myths around marrow donation.  The facts below are listed on the official website of the national marrow registry.

1. Bone marrow donation doesn't always mean surgery.  Actually, 70% to 80% of donations are done through PBSC (peripheral blood stem cell) donations, which is similar to giving blood.  The rest cases need using anesthesia to extract stem cells from the hip bone (not spine) to minimize the risk.

2. The most common PBSC procedure takes a few hours.  Surgical donation will take about a week to fully resume daily activity, and the donor will feel slight pain.

3. PBSC will not touch any bone at all.  The rest 30% cases will extract stem cells from the hip bone.

4. The marrow registry will pay for all the fees, including transportation and missing working days.

Common facts about blood cancers

1. Blood cancers are not that rare. 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. 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. 

3. How to match the donor with the recipient? 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.

4. A person must be at least 18 to donate because the 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.

5. 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.

Donor-recipient Interview

BeTheMatch interviewed our first donor recently, and our donor talked about her personal feelings and experiences for being a marrow donor.  Please click here to watch the interview video.