What Is Be The Match The Bone Marrow Donor Registry?

Be The Match is the organization that runs the National Bone Marrow Donor Program in the United States. It is the largest and most diverse registry of volunteer blood stem cell donors in the world. When a patient with leukemia, lymphoma, or another blood disease needs a bone marrow or stem cell transplant, doctors search this registry to find a matching donor.

What Is Be The Match The Bone Marrow Donor Registry?

Be The Match connects patients who need a life-saving transplant with volunteer donors who are willing to give their blood stem cells. The registry holds the tissue typing information of millions of volunteer donors. This information is called HLA typing, and it determines whether a donor is compatible with a patient.

The organization was founded in 1987. It was created because many patients, especially those from minority communities, could not find matches within their own families. Before the registry existed, a patient’s only realistic chance of finding a donor was a sibling. Today, about 30 percent of patients find a matching donor within their family. The other 70 percent depend on the registry.

Be The Match does more than maintain a list of names. It manages the entire donation process, from the initial search to the actual collection of stem cells. It also funds research and provides support services for patients and their families.

How Does the Donor Matching Process Work?

Matching is based on proteins on the surface of white blood cells. These proteins are called human leukocyte antigens, or HLA. They act like identification tags for your cells. Your immune system uses them to tell your own cells apart from foreign cells.

When a patient needs a transplant, doctors test the patient’s HLA type. Then they search the registry for donors with a closely matching HLA type. A close match is critical. If the HLA proteins are too different, the patient’s immune system will attack the donated cells. This is called graft rejection. Or the donated cells will attack the patient’s body. This is called graft-versus-host disease.

In the past, a perfect match was required. That changed with advances in medical science. Today, doctors can often use a donor who matches at 8 out of 8 or 10 out of 10 HLA markers. This has expanded the pool of potential donors significantly.

Finding a match is much harder for patients of certain racial and ethnic backgrounds. HLA types are inherited, and they vary by ancestry. A patient is most likely to match someone of the same racial or ethnic background. Because the registry has fewer donors from minority communities, those patients wait longer and some never find a match.

What Happens When You Join the Registry?

Joining the registry starts with a simple cheek swab. You rub a cotton swab on the inside of your cheek to collect a sample of cells. You mail that sample to a laboratory, where it is analyzed for your HLA type. Your information is then added to the searchable database.

The process is free for donors. Be The Match covers the cost of the swab kit and the lab analysis. In most cases, you must be between the ages of 18 and 40 to join. This age limit exists because research shows that younger donors produce better transplant outcomes for patients.

You also need to be in generally good health. Certain medical conditions may disqualify you from donating. These include some autoimmune diseases, certain cancers, and conditions that affect your blood or immune system. The screening process is thorough because the safety of both the donor and the patient is a priority.

Most people who join the registry will never be called to donate. The chance that any specific donor will match a patient is small. But for the patients who do find a match, that donor is their only hope.

How Are Stem Cells Collected From Donors?

There are two methods of donating blood stem cells. The first is called peripheral blood stem cell collection, or PBSC. This is the most common method, used in about 80 percent of donations.

For PBSC donation, the donor receives injections of a medication called filgrastim for five days before the collection. This medication stimulates the bone marrow to release stem cells into the bloodstream. On collection day, blood is drawn from one arm, passed through a machine that separates out the stem cells, and the remaining blood is returned through the other arm. The process takes four to eight hours.

The second method is called marrow donation. This is a surgical procedure performed under general anesthesia. A needle is inserted into the back of the pelvic bone to draw liquid marrow from the bone. The procedure takes about one to two hours. Donors typically feel soreness in the lower back for a few days afterward.

Both methods are safe for healthy donors. The most common side effects of PBSC donation are headache, bone pain, and fatigue from the filgrastim injections. These usually resolve within a few days. Marrow donation carries the risks of any surgery involving anesthesia, but serious complications are rare.

What Does the Donation Experience Feel Like?

Many donors describe the experience as uncomfortable but manageable. The filgrastim injections can cause flu-like symptoms. Some donors report significant bone pain. Most say it is comparable to a bad cold or a mild case of the flu.

The collection itself is not painful. For PBSC donation, you lie in a bed while the machine does the work. You can watch television, read, or sleep. For marrow donation, you are asleep during the procedure. The recovery is similar to recovering from any minor surgery.

Your body replaces the donated stem cells within four to six weeks. There are no permanent effects on your health. Donating stem cells does not weaken your immune system or shorten your lifespan.

Some donors experience emotional effects after donating. It is a profound experience to know that you have given someone a second chance at life. Many donors report that the experience was one of the most meaningful things they have ever done.

Who Can Be a Donor?

Anyone between 18 and 40 who is in good health can join the registry. There is no upper age limit for donating if you are already on the registry and are called as a match. But the initial enrollment is limited to those under 40.

You do not need to be a specific blood type. HLA type is independent of ABO blood type. You do not need to be a certain weight, although very low or very high body weight may affect your ability to donate safely.

People with certain medical conditions cannot donate. These include active cancer, heart disease, and some autoimmune disorders. If you have a chronic condition, the screening process will determine whether you are eligible.

Pregnant women are not eligible to donate. Women who have been pregnant may have antibodies that could cause complications for the patient. This does not mean you cannot join the registry, but it may affect whether you are selected as a donor.

What Are the Risks of Donating?

Serious complications from stem cell donation are rare. A review of data from the National Marrow Donor Program found that the rate of serious adverse events is very low. The most common issues are related to the filgrastim injections or the anesthesia used during marrow donation.

For PBSC donation, the filgrastim can cause an enlarged spleen in rare cases. This is usually temporary and resolves on its own. For marrow donation, the risks are those of general anesthesia, including allergic reactions and breathing problems.

It is important to understand that donation is not risk-free. No medical procedure is completely without risk. But for a healthy person between 18 and 40, the risks are comparable to other routine medical procedures.

Some people worry that donating stem cells is like donating a vital organ. It is not. Stem cells are replaced by your body. You are not giving up a part of yourself permanently.

What Does It Mean for Patients?

For a patient with a blood cancer like leukemia, a stem cell transplant is often the only curative treatment. Chemotherapy and radiation can put the disease into remission, but a transplant can eliminate it entirely. The donated stem cells rebuild the patient’s entire blood and immune system.

The transplant process is grueling. Before the transplant, the patient receives high-dose chemotherapy and sometimes radiation. This destroys their own bone marrow and immune system. Then the donated stem cells are infused through an IV, like a blood transfusion.

It takes weeks for the donated cells to engraft, or start producing new blood cells. During this time, the patient is extremely vulnerable to infection. The full recovery process takes months to a year.

Not every transplant is successful. Some patients develop graft-versus-host disease, where the donor cells attack the patient’s organs. Others relapse after transplant. But for many patients, transplant is the difference between life and death.

How Do You Join the Registry?

You can join online through the Be The Match website. The process takes about 10 minutes to complete the online form. Then you receive a swab kit in the mail. You swab your cheeks, mail the kit back, and you are in the registry.

Be The Match also holds registration drives at universities, community centers, and corporate events. These drives make it easy to join in person. The organization particularly encourages people from minority communities to join because the need is greatest there.

Joining the registry is a commitment. If you are matched with a patient, you will be asked to donate. You can change your mind at any time, but doing so after a patient has started their conditioning regimen is devastating. That patient has already had their own immune system destroyed. If you back out, they may die.

Do not join the registry unless you are genuinely willing to donate. The registry is not a symbolic gesture. It is a real commitment to save a life if you are called.