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Explore leukemia, transplants and donor matching.

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Scroll to explore · Educational guide

WHY MATCHING IS SO HARD

A life-saving transplant can depend on finding one person.

Why finding a matching blood stem cell donor is so hard — from a leukemia diagnosis to the global registry.

An interactive story from the Jada Bascom Foundation. Educational information only — the Foundation refers people to independent donor registries; it does not run one, and it does not provide medical care or individual advice.

Why Matching Is Hard

Leukemia Explained

This story is about blood-forming stem cells, which can be collected from blood, marrow or donated cord blood.

  • Red blood cellsCarry oxygen around the body.
  • PlateletsHelp blood clot and limit bleeding.
  • White blood cellsHelp defend the body against infection.

The branching illustration simplifies a complex, continuous process. Acute leukemia develops quickly; chronic leukemia often develops more slowly.

The animation illustrates acute leukemia. It does not show every type of leukemia or any individual person’s disease.

  • Too few red cells can cause anemia, with tiredness, paleness or breathlessness.
  • Too few platelets can make bruising or bleeding more likely.
  • Too few functioning white cells can make it harder to fight infection.

Symptoms alone cannot diagnose leukemia. Persistent or concerning symptoms should be assessed by a healthcare professional. People already receiving cancer treatment should follow their team’s urgent-contact instructions for fever or other new symptoms.

A marrow sample taken to diagnose a patient is different from the collection procedure used when a donor gives marrow.

  • AML — acute myeloid leukemia. Usually progresses quickly and requires prompt treatment.
  • ALL — acute lymphoblastic leukemia. Also progresses quickly; treatment differs between children and adults.
  • CML — chronic myeloid leukemia. Often managed with medicines called tyrosine kinase inhibitors.
  • CLL — chronic lymphocytic leukemia. Some people are monitored without treatment until it is needed.

Each type has further subtypes. A leukemia name alone cannot predict someone’s treatment or outcome.

Side effects vary. Supportive care can include medicines for symptoms and infections, and red-cell or platelet transfusions. Transfusions support the patient; they are different from a blood stem cell transplant.

Some people with leukemia may be evaluated for an allogeneic blood stem cell transplant. Treatment decisions are individual and should be discussed with the transplant team.

When a donor transplant may be needed, HLA testing and a donor search can begin early, alongside treatment. The search does not have to wait for a relapse.

A transplant can offer a chance of long-term disease control or cure, but it also carries serious risks. Patients and their teams weigh those risks against other options; there is no single rule for everyone with leukemia.

Low blood counts and infection risk require close monitoring and supportive care. The regimen and its risks are explained by the transplant team.

Engraftment is a clinical milestone, not one isolated rise in a blood count. It does not mean the immune system has fully recovered or that the leukemia is cured.

The treating team can help with physical recovery, emotional support and practical concerns such as travel, housing and finances.

GVHD can affect different organs and may persist long term. Its likelihood and severity depend on several factors, including the prevention regimen.

The next chapters explain how donor matching fits into that carefully planned care.

HLA class I protein. Simplified illustration.

Move across the molecule — open a numbered marker.

HLA matters, but the highest match count alone does not always identify the best donor. Current approaches can use partially matched donors for some patients.

A team confirms HLA types by testing. It also checks a potential donor’s health and suitability.

25.0%
Chance of at least one full sibling match

Each full sibling independently has a 25% chance. Testing more siblings raises the odds that one of them matches — it never changes any single sibling’s 1-in-4.

Any donation requires assessment, information and voluntary consent.

A registry lists potential donors; a cord blood bank stores donated units. Neither a listed person nor a stored unit is automatically suitable or available for a particular patient.

A historical snapshot of full-match availability

In NMDP’s June 2024 United States research summary, availability of an 8/8 unrelated donor ranged from approximately 29% for Black patients to 79% for White non-Hispanic patients.

  • United States population estimates reported in 2024; not a current worldwide rate.
  • Not an individual prediction or the chance of receiving any transplant. Partially matched donors and cord blood are separate options.

The illustration groups similar HLA patterns. Its colors and positions do not represent races, countries, actual donors or anyone’s personal odds.

A possible match is shown in gold.

  • HLA is inherited; appearance and nationality do not establish a match.
  • Some HLA combinations are less common on registries.
  • Representation and donor availability affect the search.
  • Donor selection involves clinical factors beyond HLA alone.

Matching is one part of access. Timing, donor availability, specialist care and access to treatment also matter.

  • Keep your contact details current with your registry.
  • Tell the registry about health or availability changes when it asks.
  • Respond promptly if contacted, even if you are unsure you can donate.

A medical deferral or a decision not to donate can change a search. Registries discuss the commitment and support available so donors can make an informed choice.

JBF helps people find independent registries. It does not decide eligibility, collect swabs or perform HLA testing.

8 of 8markers match

A schematic comparison — not any specific person

The transplant team considers HLA along with other medical and donor factors.

Public donation makes a unit available to suitable patients. It is different from paying for private storage for a family; neither route guarantees that the unit will be used.

There is no universal rule that each additional matching marker guarantees a better outcome.

Results depend on the patient, disease and regimen. These advances do not guarantee a suitable available donor, access to transplant or a successful outcome everywhere.

Joining and donating are different steps

  • Joining usually involves a health questionnaire and a cheek swab or blood sample. The registry explains its process. Sending a sample adds your HLA type for future searches; it is not a stem cell donation.
  • Many registered people are never asked to donate. A possible match leads to further testing, a health assessment and a discussion of informed consent.
  • Peripheral blood stem cell donation collects cells through a machine after several days of preparation injections. Temporary bone or muscle aches, headache and fatigue can occur.
  • Marrow donation collects cells from the back of the pelvic bones under anesthesia. It can cause temporary hip or back soreness and fatigue. It does not collect marrow from the spine.
  • In the United States, NMDP reports that about 90% of its donations use peripheral blood stem cells. The proportion, requested method and arrangements can differ in other programs.
  • Both methods carry risks. Serious complications are uncommon, but recovery varies. The donor team explains the procedure, risks, follow-up and support before someone decides.

Registries set their own joining ages and health criteria. Check the current rules for where you live. If you are already registered, update your details with that registry rather than joining again.

If the registry contacts you

  1. Confirm whether you are willing and available, and update your health information.
  2. Complete further testing to confirm the HLA match and medical suitability. A possible match does not mean you have been selected.
  3. Discuss the collection method, risks, consent, travel, time away from work and any expense support with the donor team.
  4. If selected and you agree, complete the preparation, donation and follow-up arranged by the registry. Dates can change with the patient’s treatment.

Donation is voluntary. Raise concerns or changes in availability promptly: once a patient starts conditioning, a late withdrawal can put them at serious risk. Joining should be an informed commitment to consider donating if called. Program rules, expense support and donor-recipient contact policies vary by country.

Other ways to help

  • Support JBF’s donor education and outreach with a donation or by volunteering.
  • Share accurate registry information with eligible friends, family or your community.
  • Ask your local blood service about giving blood or platelets. Its eligibility rules are separate from a stem cell registry’s.
  • If you are expecting a baby, ask whether your hospital offers public cord blood donation.

Why this Foundation exists

Jeana Moore founded the Jada Bascom Foundation after her granddaughter Jada received a bone marrow transplant as a baby. The Foundation supports awareness, education, donor recruitment and outreach, and connects visitors with independent registries.

Why Matching Is So Hard: Leukemia | Jada Bascom Foundation