frequently asked questions
What are stem cells and bone marrow and who can they help?
Blood cancers, such as leukaemias and lymphomas, are the most well-known. There’s also several bone marrow or blood diseases, such as severe aplastic anaemia; inherited immune system and metabolic disorders, to name a few. Bone marrow and stem cells are bona fide miracle workers for patients living with these diseases.
Am I eligible to become a donor?
You need to hold a valid Medicare card and be willing to donate anonymously to any patient in the world. However, ABMDR donations are always collected in Australia.
Exclusion Criteria Includes:
- Thalassaemia major, sickle cell disease, Fanconi anaemia or haemophilia
- Organ or bone marrow transplant
- Stroke or heart attack
- HIV (human immunodeficiency virus) or HTLV (human T-cell lymphotropic virus)
- Any past history of cancer, with the exception of two minor skin cancers – basal cell carcinoma (BCC) and squamous cell carcinoma (SCC). Pre-cancerous conditions like carcinoma in situ of the cervix are acceptable.
- Any history of severe autoimmune disease. Serious autoimmune disorders include:
→ Systemic lupus erythematosus
→ Multiple Sclerosis
→ Rheumatoid arthritis
→ Type 1 diabetes mellitus
→ Ulcerative colitis
→ Crohn’s disease
→ Ankylosing spondylitis
→ Guillain-Barre syndrome
→ Immune thrombocytopaenic purpura
- Minor autoimmune diseases may be acceptable, including:
→ Alopecia areata
→ Coeliac disease
→ Hashimoto’s thyroiditis, if thyroid function is stable on replacement medication
→ Grave’s thyroiditis, if thyroid function is stable after treatment
→ Pernicious anaemia, if successfully treated
→ Sjoegren’s syndrome, in the absence of serious auto-immune diseases
If you have any questions about these criteria contact us at firstname.lastname@example.org
Donors who have resided in the UK, travelled overseas, gotten a tattoo, engaged in intravenous drug use or had male-to-male sex can join the Registry and become a donor.
However, donors recruited to the Registry through the Australian Red Cross Lifeblood may still be required to meet their eligibility criteria. Please refer to the Lifeblood for more information.
I’ve heard young men make better donors? Isn’t that a tad sexist?
Not really. It’s just the whole plain truth. Why? Don’t worry it is not a question of quality, but quantity. By being on average larger, men can give more stem cells. Physicians also tend to select males over females to avoid logistical issues that may arise if a donor is pregnant or breastfeeding. Women who have been pregnant can also produce antibodies that can trigger a condition called Graft versus Host Disease (GvHD) in patients who receive their donated cells. This can be very serious and may even affect the patient’s chances for survival. All that said, young, healthy, women can still be great donors, that’s why we’re still accepting both females and males onto the registry.
Age restrictions? But why?
What’s more, it costs a substantial amount of money to add each donor to the register. As we are a charity with limited resources, we need to focus on recruiting the people most likely to be chosen as donors.
Of course, people older than 30 make good donors too, and that’s why we are still accepting donors up to 45 and ask potential donors to stay on the registry until they reach their 60th birthday.
What am I being tested for when I join the registry?
What if I’ve already been tissue typed for a family member in the past?
If you have been tissue typed in the past for a family member and wish to volunteer to donate your bone marrow for an unrelated patient that’s great! Send us an email at email@example.com and we can walk you through the process.
Can I give to a specific person?
So please, before registering, consider that you might not save YOUR friend or relative, but someone else’s.
Am I only registering for the Australian registry? What make this process international?
There are 53 countries that have one or several national stem cell and bone marrow registries. Instead of working in silos, we’ve decided that linking our registries will give us access to way more potential donors. This allows patients from Australia and all over the world to access more donors and more HLA types, increasing their chances of finding a perfect match.
You can access the complete list of donor countries at www.wmda.info.
Will my personal information be kept private and secure?
We recognise the importance of respecting your privacy and protecting the confidentiality of you and your family’s personal and health information. We collect this information to ensure safe matching of potential donors and to maintain the quality of the registry database. We work closely with the Australian Red Cross Blood Service (Blood Service) and a network of health professionals and partner organisations, including registries in other countries. We do not provide information that would identify you to persons outside The Registry, The Blood Service or the health professionals involved in your care.
I am already registered as a donor in another country. Can I transfer my details to the Australian registry?
Yes! Send us an email at firstname.lastname@example.org and we can walk you through the process. You will be asked to complete a donor enrolment form and provide a tissue typing report from the transferring registry.
What are the odds of actually being asked to donate?
It depends on many factors, including the size of the registry, your age and your sex.
For instance, here in Australia there are 170,000 donors on the registry. All donors on this list have approximately 1-in-1500 chance of donating. However, if we focus on stronger, younger donors and just look at men aged 18-30, the likelihood of getting asked to donate is much higher.
The odds aren’t super high, but they sure are higher than winning the lottery!
What happens if I am selected to be a donor?
Can I change my mind?
There are many reasons why you may need to decline at the time of the donation request, such as poor health, family or work commitments or if you simply have reservations about donating. However, once you’ve agreed to act as a donor, it is vital to follow through with the process because there is a point-of-no-return for the patient.
About a week before the transplant the patient has chemotherapy and/or radiotherapy to destroy the diseased bone marrow. This treatment can be fatal unless healthy cells are transfused. At this time you have a moral obligation to proceed.
What if I say no?
You’ll always be free to decline to donate, and your answer will remain confidential. However, saying no can have very serious consequences if you withdraw once you’ve been identified as someone’s match.
So before signing up all gung-ho because your friend or relative is sick, take the time to think things through. And when you do sign up, do it to save anyone, anywhere, from the moment you register until your 60th birthday. Yep, it’s one long commitment.
Also, if you’ve signed up and realize you’re not up for it, no worries, just contact us as soon as possible at email@example.com so we can remove you from the registry.
How does donation work?
Donating stem cells used to be a huge deal. But boy, have times changed! Here in Australia 90% of blood stem cell donations are like a long blood donation, with the donor fully awake, scrolling through Instagram and eating chocolate bars (yes, plural).
In about 10% of cases, often when the patient is a child, a one-day surgical procedure will be needed to extract bone marrow from the hip bone. This is done under general anaesthetic but don’t worry: sounds scarier than it is. Regardless of how the donation is done, the body replenishes the donated stem cells in about 4 to 6 weeks.
The patient’s physician will request the type of donation that’s best for the patient. When you go for your medical assessment the doctor looking after you will let you know if you are better suited to one method or if either are suitable.
Here’s a quick explanation of both techniques.
Method 1– Peripheral blood stem cell (PBSC) donation involves stimulating the production of stem cells to release them in the blood stream. A medical professional (nurse, GP, yourself potentially!) will oversee your first injection, and you will receive a 4 day course in the lead-up to your donation. On the day of the donation the collection nurses will take your blood through a needle in one arm. The blood is passed through a machine that separates out the stem cells needed for the transplant. The remaining blood is returned through the other arm. This is how 90% of donations work.
Method 2– Bone marrow donation is a surgical procedure in which liquid marrow is withdrawn from the back of the donor’s hip bone using needles. General anaesthesia is always used for this procedure, so donors feel no pain during marrow donation and usually just a dull achy feeling for a few days after. Bone marrow is usually preferred when the patient is a small child. Wait, what? That’s right—there’s a lot of little kids out there waiting for your healthy cells! So stop being a scaredy-cat and hop into that styling hospital gown.
Does it cost anything to join or donate?
The main cost to you as a donor will be your time. This includes time to enrol, provide additional blood samples if requested and time to be assessed by the doctor and actually donate your stem cells if you are matched to a patient in need.
The Donor Registry will cover all medical and hospital expenses related to the donation including incidental expenses associated with the donation such as travel to and from hospital. If you live far away and need to stay overnight your accommodation and out of pocket costs will also be reimbursed. Note that, as a volunteer, you will not receive any form of payment for donating.
What happens after I donate?
After your donation you’ll be temporarily unavailable for the general population to ensure you’re available for the same patient in case they need a second transplant or other matched blood products. If this is the case you may be asked to do another full donation or just a normal blood donation. After two years you’ll automatically become available again for other patients.
You’re health and safety, after donation is just as important to us as your health before. For this reason, we will stay in regular contact for a while to make sure you’re okay. You can expect a call within 3 days of collection and weekly until you are fully recovered and have resumed your normal activities. We will also get in touch at three months and then annually for up to 10 years to check your general health. If you have donated peripheral blood stem cells you will also be asked to see your general practitioner (GP) after the donation.
Can I donate more than once?
Can I contact the patient?
We are happy to pass on anonymous cards or letters, just make sure you do not include any identifying details like names, locations or birthdays.
If you’ve exchanged a few letters with your patient and you are keen to share your personal contact details you’ll need to sign a consent form authorising the release of your personal information. As long as two years have passed since the donation, and the patient is also keen, then you will both receive these details and can get in touch directly.
Unfortunately some registries do not allow any correspondence or contact between donor and patient, so if your patient lives overseas, contact might not be possible.