Information about stem cell donation
Below are answers to common questions about stem cell donation.
Stem cells are the “parent” cells from which all other blood cells develop. These are mainly red blood cells, platelets and white blood cells. Bone marrow, the factory that produces stem cells, is a soft tissue inside bones like the breastbone or hip bone.
Stem cells are found in bone marrow, peripheral (circulating) blood and the umbilical cord blood of newborn babies.
Certain diseases destroy bone marrow or stop it from functioning properly. Because bone marrow produces normal blood, a person’s life may be in danger if his bone marrow is not working well.
Usually very severe illnesses like leukemia (blood cancer), other cancers and hereditary diseases.
No. Other treatments are tried first, to see if they will halt the disease (chemotherapy, radiotherapy, specialized drugs). But in some cases, the treatments do not work. The only way to save the patient is to replace his stem cells with normal stem cells from a healthy person.
The transplanted stem cells should resemble the patient’s stem cells as closely as possible. Because cell characteristics are inherited, we start by looking for a compatible donor, whose genetic markers are a close enough match to those of the patient, within the family, usually among the brothers and sisters. These tissue markers are found on all the body’s cells, including stem cells. If the donor’s and recipient’s markers are not sufficiently alike, a transplant cannot be performed because it would not work. The chance of finding a compatible donor in the family is about 25%, or 1 in 4.
These markers make up the HLA system. This is a very complex hereditary system that can be studied by performing a buccal swab. The HLA system is not the same as the blood groups (A, B, O and Rh) used for blood transfusion purposes.
We look in the Stem Cell Donor Registry and try to find a compatible unrelated donor. However, the odds of finding a compatible donor are much lower than in the family: 1 in 450 to 1 in 750,000.
Because the HLA system is so complex, there is very little chance of finding a compatible donor outside the patient’s family. We need a list of an enormous number of people whose HLA characteristics have been analyzed and who could ultimately agree to donate stem cells for a patient. This is called the Stem Cell Donor Registry.
Anyone aged between 18 to 35, in good health, can donate stem cells.
Your relative’s transplant physician is responsible for identifying all potential donors in your family and having them tested to see if there is a compatible family member. Héma-Québec only becomes involved when the physician requests a search for an unrelated donor because no compatible donors have been found in the family.
No. It is highly improbable that the stem cells of friends would be compatible. The patient’s best hope is still the international registries, which list over 30,000,000 potential donors ready to help patients who need stem cells and have no compatible sibling donor.
Héma-Québec’s mandate is to find a compatible donor in these banks for any patient awaiting a transplant, including your friend. We accept any new donor who wants to help patients awaiting a transplant and fulfills the program’s health criteria. Only these donors can be tested and added to the Stem Cell Donor Registry.
The best way is to become a blood donor, or continue giving blood if you do so already. The blood you donate undergoes a whole battery of tests that certify its quality. The conditions for being a blood donor are almost the same as those for being a stem cell donor. When you give blood regularly, we can keep your file up to date and be sure you still qualify for donating stem cells. For various reasons, certain people are unable or unwilling to give blood; this does not necessarily exclude them from the Stem Cell Donor Registry.
If you feel you have enough information and want to go on the Stem Cell Donor Registry, Héma-Québec laboratory has to determine your HLA typing. Your characteristics are then entered in a computerized registry available to all patients awaiting stem cell transplants in Canada and around the world. If one day a patient with the same HLA characteristics as you needs a donation, you will be contacted. However, it may be a long time (months or years) before you are contacted.
First you have to answer another set of questions qualifying you to donate cells for this patient.
We do another test, for more detailed investigation of your HLA typing, to screen for any possible incompatibility with the patient. Tests for infections transmissible by stem cells will also be performed.
If the results are satisfactory, an official from Héma-Québec contacts you to complete your evaluation leading up to the donation, and find out whether you still want to go ahead.
You meet with a transplant specialist who explains in detail what the donating process involves. He gives you a thorough physical examination and various tests, including a lung x-ray, electrocardiogram and blood tests. The purpose of all these examinations is to check that your health will not be jeopardized if you donate stem cells.
Bone marrow is removed from the hip bones with the appropriate sterile needles. The procedure is performed in the operating room under general anesthetic or epidural. This bone marrow is then transfused into the patient within 24 to 48 hours. The bone marrow transfusion procedure is identical to the procedure used in blood transfusions.
For an adult patient, the usual amount required is about one litre of bone marrow (or 3 to 5% of the total volume of bone marrow in the body), which is twice the volume of blood given during a regular blood donation.
Yes. Because the HLA system is so complex, it is very unlikely that more than one donor is compatible with the patient.
No surgery or anesthesia is risk-free. The risks involved, and the specific risks of bone marrow donation, are explained to you by the physician who will be collecting your bone marrow, before the transplant is definitely decided on.
Donating bone marrow usually involves a 24-hour stay in hospital. The resulting pain by the harvesting is mild and complications are rare.
Donating bone marrow does not compromise your health in any way, because the marrow that has been removed soon forms again naturally (3 to 4 weeks).
To collect peripheral stem cells, the donor is injected with a substance that increases the quantity of stem cells circulating in the blood.
The cells are then harvested using a process called apheresis. Blood is taken from the donor’s arm with a needle, and flows into a centrifuge. This device filters out the stem cells, and the remaining blood is injected back into the donor with the same needle.
Like bone marrow donation, the procedure takes place at the hospital or day clinic. The physician in charge of collecting the stem cells will explain the particular risks of this type of donation.
You can always have your name removed from the Registry, for whatever reason. If you are contacted about a stem cell donation, you go through various steps and will be asked to confirm that you are committed to going ahead.
You can withdraw at any time; however, once it has been decided to go ahead with the transplant and the patient receives treatments in preparation for this transplant, your commitment becomes crucial. To prepare a patient for a stem cell transplant, doctors have to destroy the patient’s own bone marrow with chemotherapy or radiotherapy. Once it has been destroyed, the patient will die unless he receives a stem cell transplant. So after a certain point, keeping your word is literally a matter of life and death for the patient. You will be informed about the stage after which your refusal to go ahead could endanger the patient’s life.
Sadly, no. There has been considerable progress in recent years, but stem cell transplants do not cure every patient. Everything depends on the illness and the patient’s condition. When the donor is a relative, the chances are better than with an unrelated donor. But the important thing to remember is this: for these patients, a stem cell transplant is often their last chance of a cure, because all other treatments have failed.
Travel and hospitalization costs are fully reimbursed, but no compensation is paid for missed work time. However, most employers will allow special leave of absence when they hear that the donation is vital.
Your anonymity is maintained at all times. Your identity cannot be disclosed without your consent. Héma-Québec takes this anonymity very seriously so as to respect your freedom of decision and choice. Depending on the recipient’s country of origin, you may find out who it is and vice versa after one year.
All the data collected on donors is recorded and kept in a computerized register at Héma-Québec. Your genetic profile is shared anonymously throughout the world. If a search of the Registry reveals a compatible donor for a recipient, Héma-Québec will communicate with the potential donor.
The Héma-Québec Registry contacts the Canadian registry and other registries throughout the world (United States, Europe).
It is a donor whose tissue genetic markers are sufficiently similar to those of the patient. These tissue markers are present in all the body’s cells, including stem cells. If these markers are not sufficiently similar between the donor and recipient, we cannot proceed to transplant because it is an assured failure.
There are nearly 53,000 donors registered in Héma-Québec’s Stem Cell Donor Registry. In Canada, there are hundreds of thousands of donors registered. Recruitment continues, and this number is constantly rising.
These registries gave access to nearly 38 million possible donors. Again, this number is constantly increasing, thanks to recruitment campaigns by all the countries involved.