WHY IS A TRANSPLANT NEEDED?
A bone marrow transplant is needed for patients with a blood borne cancer like leukemia and lymphomas, as well as other diseases like sickle cell anemia. According to the Be The Match bone marrow registry, someone dies from a blood-borne cancer every 10 minutes equivalent to 144 deaths per day in the United States. A bone marrow transplant is usually the last lifesaving effort available after other means like chemotherapy and radiation have been exhausted.
There are 144 deaths per day in the U.S. from blood-borne cancer.
WHAT IS BE THE MATCH?
Be The Match bone marrow registry is a nonprofit organization that began in 1987. The Be The Match bone marrow registry is the largest bone marrow registry in the world with over 11 million registrants. Its purpose is to recruit potential bone marrow donors to join the registry and to match those in need of a bone marrow or peripheral blood stem cell (PBSC) transplant with a potential donor.
HOW TO DONATE?
Bone marrow can be donated two ways. One is a surgical procedure simply referred to as a bone marrow transplant. The other is a non-surgical procedure called apheresis. According to the Be The Match registry, the bone marrow surgical procedure is conducted 80% of the time and the apheresis non-surgical procedure is conducted 80% of the time. Until recent years, a bone marrow transplant was the only option available. Due to modern medicine, now there is also PBSC. The doctor determines which procedure to take based on the recipient’s medical needs. Both the bone marrow and PBSC transplant procedures are free for the donor.
The medical examinations and the donation procedure are at no cost to the donor.
BONE MARROW TRANSPLANT FACTS
What is Bone Marrow?
Bone marrow is a soft spongy substance that can be found in the cavities of some of our bones. This is where blood cells are produced. Peripheral blood stem cells (PBSC) are immature blood cells found in the bone marrow and blood. They can grow into a red blood cell, white blood cell, or platelet. Both procedures extract stem cells from the donor.
WHAT IS A BONE MARROW TRANSPLANT?
The bone marrow surgical donation was the only procedure for years. Other than the medical checkup, the donor does not have to undergo any other preparatory work. The procedure is conducted in a hospital setting. The donor is anesthetized and intubated for surgery, the donor is placed on their stomach for the procedure, and the bone marrow is taken from the donor’s pelvic bone. The aspiration needles are inserted about one inch above the buttocks and one inch on both sides of the spinal cord.
According to the Cleveland Clinic Foundation, approximately one to two quarts of bone marrow is extracted, which is about 5% of an average adult’s total bone marrow. According to the National Marrow Donor Program (NMDP, parent company of Be The Match), the donor stays in recovery at the hospital for several hours before receiving a prescription for pain before being released. The recovery takes about a week to engage in normal activities; however, patients may experience lower back pain for approximately a month around the incision area. The donation procedure is at no cost to the donor.
PERIPHERAL BLOOD STEM CELL (PBSC DONATION
The first PBSC procedure was conducted in 1999 by the NMDP (parent company of Be The Match) for transplants. Within four years more PBSC transplants were being conducted than the bone marrow surgical donation procedure. According to the NMDP, PBSC requires that the donor be given Filgrastim intravenously every day at the same time for five days. Filgrastim increases the number of stem cells produced in the bone marrow. Filgrastim causes the extra stem cells to mature and enter into the blood stream. The drug is injected by a nurse daily. The first shot is given in a medical setting to monitor the patient for an adverse reaction. The nurse injects the Filgrastim for three days at the donor’s home or work location. The last injection is given to the donor at the hospital on the day of the stem cell extraction. The drug can cause spasms in the diaphragm and muscle and bone aches.
According to the NMDP, normally, the donor is prescribed medicine to abate the pain. The stem cells are extracted using a non-surgical procedure called apheresis, a procedure whereby blood is continually drawn from a donor’s arm and circulated through a machine that removes the stem cells or white blood cells while the rest of the blood is returned to the donor in the opposite arm. On the day of the extraction, an intravenous line that branches off into three or four lines is placed in one hand or arm. The actual extraction takes about six to eight hours. There is no residual pain immediately after; however, the donor may experience nausea and tiredness. Slight nausea and/or light-headedness is expected, as the donor’s body takes approximately six weeks to reproduce the lost bone marrow and stem cells. The donor’s immune system is lowered during this time as well. The donation procedure is at no cost to the donor.
THE RECIPIENT EXPERIENCE
The Registry searches for a bone marrow match immediately after a person has been diagnosed with a blood-borne cancer. The recipient endures several lifesaving efforts before a bone marrow transplant is done. This normally includes chemotherapy and radiation. If these lifesaving efforts do not do the job, the bone marrow donor is contacted. Prior to the transplant, the recipient’s bone marrow cells are killed so that they can accept the donor’s healthy cells. The recipient’s health is in a precarious position at this point. The recipient can take a turn for the worse and die prior to the transplant.
THE BONE MARROW DONOR EXPERIENCE
The potential donor is contacted immediately if a bone marrow match is made. The Be The Match bone marrow registry informs the potential donor that he or she is a match and are needed to donate bone marrow. The Be The Match bone marrow registry shares basic information about the recipient within the Health Insurance Portability and Accountability Act (HIPAA) guidelines, such as age and disease. The Be The Match bone marrow registry confirms with the potential donor whether or not they are willing to complete the donation if needed. If so, the donor then waits for the call to donate. The wait can take several months to a year. During this time, the recipient is exhausting other lifesaving means, such as chemotherapy and radiation. The donor is contacted after the recipient is ready for the transplant. The donor then completes a consent-to-donate form before the medical check-up and the donation procedure. The Be The Match bone marrow registry schedules a telephone appointment with the donor to go over the donor’s current and past medical history. The potential donor could be eliminated for numerous reasons, which is discussed under the heading of “Who Can Join”. In the next step, if the donor’s preliminary medical interview goes well, the donor is sent information regarding the actual procedure.
The donor undergoes a thorough medical exam, including having several tubes of blood taken to test for the presence of infectious diseases, blood pressure measured, urinalysis, electrocardiogram (EKG), pregnancy test, and a chest x-ray. The full medical exam takes approximately four hours, during which the physician conducts a lifestyle and medical history interview, usually taking about 1.5 hours. During the lifestyle and medical history interview, the doctor asks questions regarding safe sex practices, number of sexual partners in the past year, drug use (illegal, prescribed, over-the-counter, vitamins, and/or herbs), needle usage, family medical history, family members’ cause of death two generations back, cancers in the family, menstrual history, past pregnancies, past surgeries, past overnight hospital stays, past medical check-ups, foreign travel within the past year, and symptomology questions that may allude to signs of a hidden medical problem.
HOW DO MATCHES OCCUR?
Be The Match bone marrow registry is a nonprofit organization that began in 1987. The Be The Match bone marrow registry is the largest bone marrow registry in the world with over 11 million registrants. Its purpose is to recruit potential bone marrow donors to join the registry and to match those in need of a bone marrow or peripheral blood stem cell (PBSC) transplant with a potential donor.
WHO CAN JOIN?
Anyone between the ages of 18 – 61 can join the Be The Match bone marrow registry. You may join the registry at no cost if you are between the ages of 18 – 44; however, it costs $100 for those over the age of 45. The $100 is tax deductible.
In addition, in order to join, the potential registrant must be in relatively good health. Certain pre-existing medical conditions could prohibit potential registrants from joining the Be The Match bone marrow registry. According to Be The Match, people with these conditions cannot donate because it could cause irreparable harm to the recipient’s already compromised health, as well as the donor’s:
- Autoimmune and neurological disorders such as lupus
- Chronic lung disease
- Diabetes requiring insulin or diabetes-related health issues
- Diseases that affect blood clotting or bleeding
- Hepatitis or risk for hepatitis
- Heart disease (most forms)
- History of cancer(s)
- HIV
- Organ or marrow transplant recipient
- Recent back surgery or ongoing back problems
- Significant obesity
WHY SHOULD BLACKS, HISPANICS, AND NATIVE AMERICANS NEED TO JOIN?
Donor-recipient bone marrow matches are determined by a person’s HLA genetic marker. Over 90% of donor-recipient matches occur within the same ethnicity. For example, Blacks match with Blacks. Blacks are the most difficult to match due to them having the most complex HLA genetic marker. This is why Blacks have the lowest bone marrow match rates.
Additionally, minorities have the lowest population on the Be The Match bone marrow registry. Currently, there are over 11 million registrants on the Be The Match bone marrow registry. Of which, approximately 800,000 or 7% are African American; however, Blacks represent over 13% of the population in the United States. The table displayed here demonstrates the population on the registry by ethnicity.
As you can see in the next chart “Matches by Ethnicity,” African Americans have the lowest match rate of all ethnicities. Overall, minorities have the lowest match rates. Those that do not find a match die waiting.
HOW TO JOIN?
You may join the Be The Match bone marrow registry by going to bethematch.org selecting “join” and completing the online registration form. Be The Match bone marrow registry will mail you a registration cheek swab kit within 3 – 7 days. Simply follow the directions included in your cheek swab kit and mail the kit back to Be The Match. After registering, be sure to contact Be The Match if you have a change of address or telephone number.
