Q&A with blood cancer charity Anthony Nolan
We invited experts from the Anthony Nolan charity for a Q&A session to help raise awareness of the importance of signing up to its bone-marrow donor register, following requests on this thread.
The Anthony Nolan team answered your questions on exclusion criteria, cord blood donation, donor recruitment and more.
Anthony Nolan helps save the lives of people with blood cancer by using its register to match them with volunteers willing to donate their blood stem cells. There are currently 430,000 people on the register, but they are only able to find a match for around half the people in need of a lifesaving transplant. The charity is particularly keen to recruit young men aged 18-30, as they are the most likely to be chosen as donors.
If you would like to find out more about Anthony Nolan, please visit Anthonynolan.org
Q. Pasha: Can you explain a bit about what makes males aged under 30 prime candidates?
A. Anthony Nolan: Men are more likely to be chosen as donors as they tend to be bigger than women, and therefore produce more stem cells. Research has shown that the younger the donor, the better the outcome for the patient. Around 80% of the donations we arrange come from young men, but they account for just 12% of the register.
Visit our Just Giving page to find out how
Q. Onehandwrapping: Why is there an arbitrary cut off age of 40?
A. Anthony Nolan: It costs £100 to add each person to our register. It can take many years for a person to be identified as a match but we have to remove them when they reach the age of 60. We need to make sure that our potential donors can stay on the register for as long as possible, to make sure that we make the best use of our limited funds.
We've also found that younger donors are the most likely to be selected by hospitals, so we need to target that particular audience.
You can join the British Bone Marrow Register (which is run by the NHS) until you're 49. If you are over 40 and can't join the register, there are many other ways in which you can help our lifesaving work, particularly by fundraising for us. As it costs £100 to add each new donor to the register, we are desperately in need of funds so we can grow our register, provide more matches and help save more lives.
Q. GentleOtter: Why can't over-50s donate even if they're very fit and healthy? Also, which Scottish hospitals participate in the cord blood scheme? Did Ninewells run a trial during 2007?
A. Anthony Nolan: Once you're on the Anthony Nolan register, you stay on until you're 60. If you come up as a match at any point during that time, you may be asked to donate. However, the cut-off age to join the register is 40, to try to make the best use of our limited funds as younger donors are the most likely to be selected by hospitals. To answer your other question, The Princess Royal Maternity Hospital in Glasgow has started collecting cord blood, which is stored in the NHS cord blood bank.
Q. SparklyGothKat: May I ask why the cut off weight is 8st. I'm normally 7st 8lb (when not pregnant) and healthy but am not able to donate. I couldn't get to 8st if I tried.
A. Anthony Nolan: During the donation process a doctor can only take a maximum of 5% of your total marrow. If you weigh 8st or less, this would be not be enough for a transplant, and taking more than 5% could put you in danger.
Q. IlovemydogandMrObama: Can children be tested to find a match for another child, or is it just siblings?
A. Anthony Nolan: Because of their shared parents, siblings have a one in four chance of being a match to each other. However, there are millions of different tissue types, and the chance of two unrelated people being a match is extremely small.
The best match is likely to come from someone with the same ethnic background as the person needing the transplant, so if your children are 18 or over, they can join the Anthony Nolan register - although we do ask that everyone who joins the register must be prepared to donate to anyone who comes up as a match and needs their help.
Q. Cece: My 11-year-old relative in Australia has leukaemia. He urgently needs a bone marrow transplant. How can I get myself and my children tested to see if we could donate?
A. Anthony Nolan: I'm very sorry to hear about your relative. The best thing for you to do would be to talk to your relative's consultant or doctor to see if they can arrange testing. If you would like to join the Anthony Nolan register, please visit www.anthonynolan.org/spit, although we ask that everyone who joins the register is prepared to donate to anyone who comes up as a match and needs their help.
Q. Whomovedmychocolate: I donated previously. How many times can one donate and is there a period when you are off-list afterwards (when you can't donate)? Also, when I donate, for example with Anthony Nolan, does that information go to the NHS register (I'm not sure how they communicate with each other)?
I put an appeal for registration on my Facebook and got a lot of cross messages from gay male friends because Anthony Nolan will not apparently let them register! Can you explain the thinking behind this?
A. Anthony Nolan: Donors can donate stem cells up to four times in total, and to a maximum of two different patients. After each donation, as standard, they are taken off the register for two years for all other potential patients. (If the original patient they donated to requires a further donation within that time period the donor will be approached regarding this.)
We work very closely with the NHS, who run the British Bone Marrow Register (BBMR). You only need to join one register, and when we receive a search request, we search our register and the BBMR, as well as all the registers worldwide.
You can join the Anthony Nolan register if you're gay. Anthony Nolan believes that a person's sexuality should not exclude them from joining our register. The criteria are the same for everyone - we ask all our donors to answer a full medical questionnaire, which includes several questions relating to lifestyle.
Q. VJayJazzle: Is it just in London that the donations can be done?
A. Anthony Nolan: All donations take place in London, but Anthony Nolan organise and pay for everything, including travel arrangements and accommodation.
Q. Stepout99: I'm a 30-year-old British citizen and I have been living as a temporary resident in Australia for the past two years, with another two years left on my visa and I plan eventually to a permanent resident of Australia.
I looked into giving blood here and they won't accept my blood as I lived in the UK during the mad cow disease outbreak. So if Australia doesn't want my blood or bone marrow, can I donate it to the UK?
A. Anthony Nolan: People can only join the Anthony Nolan register if they reside in the UK; this is to ensure that if someone was to come up as a match, they are accessible and available to donate in London. At the moment Anthony Nolan cord blood donation is limited to the UK.
Q. PastGrace: What is the reason for not being able to donate if you have a latex allergy?
A. Anthony Nolan: Our current medical guidelines state any latex intolerance/sensitivity or allergy would exclude you from joining the register. A latex allergy holds strong possibilities of serious side-effects and the procedures required for blood stem cell donation would expose you to the material.
Q. Youarekidding: I had liver inflammation in 2004 after the birth of my son which was recorded as viral hepatitis (G, I think?). This was when living abroad in a Spanish country. According to your criteria this may make me unable to donate? Could you clarify? I have no access to my medical records for the time I lived abroad.
A. Anthony Nolan: If you are certain that this was not hepatitis B and C, then you may join the register as long as you are more than 24 months from recovery.
Q. Welshmoth: I take thyroxine, but at a really low dose of 25mcg. Can I donate?
A. Anthony Nolan: We will need further details from you so this needs to be referred to our medical team. You can apply to join the register and then we can deal with your application in more detail when received. We deal with medical conditions on a case-by-case basis. If you are already registered with us, you can call us on 0303 303 0303 to discuss this.
Q. Theoriginalnutcracker: I have type C antibodies in my blood. Can I still donate?
A. Anthony Nolan: Assuming these are anti-c or anti-C antibodies, which are antibodies directed against your red blood cells, then you may join the register. However if these are antibodies to hepatitis C, then you will not be able to join the register.
Q. Kinkydorito: Why does having a history of sciatica prevent people from donating bone marrow? My daughter has leukaemia and I would like to be able to join the register so I can help other people in this horrible situation.
A. Anthony Nolan: We're very sorry to learn about your daughter's diagnosis. We're doing everything we can to recruit the people who have the highest possibility of coming up as a match. People suffering from sciatica are unable to join the register because one of the methods of stem cell donation involves a minor procedure on the lower back area, and there's a risk that this could make your condition worse.
Q. thereinmadnesslies: I tried to register last year but was told that I wasn't eligible due to a whiplash injury over a decade ago, which hasn't caused me trouble for years. I understand that the donation procedure might cause the whiplash to flare up, but I'd consider that a small sacrifice if someone's life was saved. Is there any way to apply again?
A. Anthony Nolan: We deal with medical conditions on a case-by-case basis so it would be best for you to apply and disclose this condition on the application. If we need more information from you we will call you to discuss this. To start the application process, please go to www.anthonynolan.org.
Q. Whostolemyname: On your website its states you can't donate if you have ever had cancer. I had a melanoma removed by surgery only and no further treatment. Would this still prevent me from donating?
A. Anthony Nolan: Prior to transplant, the patient's immune system is seriously impaired due to the disease and treatment. As a result, there are many medical conditions that if passed on through donation may have serious implications for a patient with an impaired immune system. Donors with melanoma are not eligible to join so that we ensure we protect the patient as much as possible.
Q. Mrssnaplegs: I have 'controlled' ME, I have always previously given blood until the change in rules. Am I ineligible because of the blood donation rules and if so what is the scientific research behind that?
A. Anthony Nolan: ME remains a poorly understood condition, and we do not fully understand the potential effects of donating stem cells on people with ME. In addition, we do not know if there is a potential risk to the patient. Because the safety of our donors is our highest priority, we must err on the side of caution when accepting people onto our register, even when hard scientific evidence is lacking.
Q. IwishIwasmoreorganised: I registered a couple of years ago and since then have been diagnosed with autoimmune hypothyroidism. It hadn't occurred to me that it might affect my eligibility to donate - does it?
A. Anthony Nolan: Unfortunately, anyone suffering from an autoimmune condition is ineligible to join the register. While an autoimmune condition may be harmless to you, it's potentially fatal to the patient should you go on to donate. Prior to transplant the patient's immune system is seriously impaired due to the disease and treatment. As a result, there are many medical conditions that if passed on through donation may have serious implications for a patient with an impaired immune system.
Q. Nomoremarbles: Is it a blanket rule that anyone with lupus (SLE) cannot donate? I have a mild form of lupus and lupus-related clotting issues (lupus anticoagulant) and just wanted to clarify as it makes me sad that I can't help.
A. Anthony Nolan: Unfortunately, anyone suffering from lupus cannot join the Register. Research suggests that the autoimmune antibodies produced in donors with this condition may be passed on to the patient through stem cell donation. While the condition may be harmless to you, it's potentially fatal to the patient should you go on to donate. In addition, people with blood clots related to lupus anticoagulant (antiphospholipid syndrome) may not join the register.
Q. Artichochohohokes: Can you join the register if you have previously received a blood transfusion (not for a medical condition but for a post-partum bleed)? I know this stops me donating any more blood but will it also prevent me donating bone marrow?
A. Anthony Nolan: If you have fully recovered you can join the Anthony Nolan register. Please visit www.anthonynolan.org to start the application process.
Q. Elibean: I had hepatitis, years ago. I've had numerous PCR tests since treatment (which was successful, back in 1998) and they have all been negative for viral DNA - it seems such a shame not to be able to donate marrow, or even blood. If there is any risk, I understand. But I don't understand what the risk would be, to be honesty, with the accuracy of PCR testing these days
A. Anthony Nolan: This depends on the type of hepatitis, and because you mention DNA, rather than RNA, this sounds like hepatitis B. People with a past history of hepatitis B may donate under certain circumstances, if there is clear evidence that the donor now has established immunity to the infection. People with hepatitis C, even if PCR is negative for viral RNA, are not allowed to donate, because of the risk of an undetectable level of the virus in the blood. People with a history of hepatitis A may donate from 12 months after full recovery.
Q. CMOTdibbler: I have tried to register, but was told that I can't donate as I have coeliac disease. I understand that it would be annoying to develop CD after bone marrow transplant (which would be very unlikely and it isn't known if it could happen), but surely better to give someone a chance of living with a dietary restriction than not at all.
A. Anthony Nolan: Coeliac disease is an autoimmune condition. While this may be harmless to you, it's potentially fatal to the patient should you go on to donate. Prior to transplant the patient's immune system is seriously impaired due to the disease and treatment. As a result, there are many medical conditions that if passed on through donation may have serious implications for a patient with an impaired immune system.
Q. Kayzr: Is there going to be a way mothers can donate the umbilical cord and placenta nationwide? I wanted to donate this when number three comes in June but I'm nowhere near any of the hospitals listed.
A. Anthony Nolan: We are looking at ways to expand our cord blood donation programme, but we are restricted by cost.
Q. Woollyhead: Can cord blood be collected if a mother has had a natural third stage and waited for the cord to stop pulsating before allowing it to be cut?
I'm all for donation, but some of the blood in the cord rightly belongs in the baby and depriving them of the last bits by cutting it immediately actually reduces the baby's iron status at six to nine months and reduces their overall blood volume after birth.
A. Anthony Nolan: We would never interfere with a mother's chosen birth plan. Whatever birth plan a mother chooses, she can donate her cord blood as long as she falls within our medical inclusion criteria.
Q. Blatherskate: Why isn't cord blood donation more widely known about? I'd have happily donated my daughter's, if I was able, had I known about it.
A. Anthony Nolan: We are actively trying to raise awareness of our cord blood programme, as well as the rest of Anthony Nolan's work.
Q. Easilydistracted: Yet another version of this question: why is donation limited to just two hospitals nationwide, and when will it be possible to donate regardless of where you give birth? If cord blood is so good, why is collecting it so restricted? I bet it's a cost issue.
A. Anthony Nolan: Women can donate their cord blood to the Anthony Nolan cord blood bank at King's College Hospital and Royal Free Hospital in London, and the Leicester Royal Infirmary and Leicester General Hospital.
The NHS collect cord blood at a further six hospitals in south-east England: Barnet General, Watford General, Northwick Park, Luton & Dunstable, St George's and University College Hospital.
We are working closely with the NHS and the government to open more collection centres, but unfortunately the costs involved in running a collection centre are very high.
Q. Brdgrl: We arranged to donate our daughter's cord blood (were lucky enough to be at one of the few hospitals where possible). I felt very strongly about wanting to do this. I was told it was all set up and my file was flagged, etc. Then, at the last minute, when labour was not progressing, I was prepped for a caesarean, then my daughter was delivered by forceps. I assume that the cord blood donation was carried through with by hospital staff, but have no way of knowing.
Am bothered by the thought that with all the change in staff and birthing plan, that maybe it did not happen and that I did not - in moment of holding new baby and being quite exhausted - remind anyone. So I guess my question is: is there any way of knowing if a cord-blood donation was received?
A. Anthony Nolan: It depends on whether you gave birth at an Anthony Nolan or NHS collection centre. If you email firstname.lastname@example.org, telling us your name, and where and when you gave birth, we'll look into this for you.
Q. Lilymaid: What does the Anthony Nolan Trust do to recruit students as potential donors? They would seem to be the ideal group to target as they have 40 years potentially on the register. My eldest son is on the register - may have joined as part of a university campaign. My second son is at university now and has just been diagnosed with CML (chronic myelogenous leukaemia), so I have a good reason to ask this question!
Find out more at www.anthonynolan.org/marrow
A. Anthony Nolan: You're right, students are an ideal group to target, and we are actively trying to recruit them. We have a student group called Marrow, which operates in 39 universities across the UK. They actively recruit new donors, raise awareness and organise fundraising events. You can find out more about Marrow at www.anthonynolan.org/marrow.
Q. Raffiiscool: What I don't understand is why a is charity co-ordinating all of this - should bone marrow donation, stem cell donation not be an NHS function and, therefore, tap into national NHS resources (existing midwifes trained to take cord blood for example).
A. Anthony Nolan: The Anthony Nolan register was the first stem cell (or bone marrow) register in the world, set up by Shirley Nolan when she was trying to find a matching donor for her son Anthony. Even though Anthony sadly passed away, his legacy lives on in our work – every day we use our register to give two people the chance of life. We work extremely closely with the NHS to make the most of our resources and provide the best possible service for people with blood cancer.
Q. Ninedragons: I'm another British citizen living abroad. I registered years ago, and then left the UK in 2000. Before I left, I contacted you to update my contact details to my college alumni association, but you said if I left the UK I had to be removed from the register.
Given that finding a match is such a lottery, has this policy been revised? There is no time in the past decade that my college couldn't have reached me by phone, email or post. It has niggled me over the years that maybe there had been someone I could have helped. If I were ever to return to the UK, would my registration be re-activated?
A. Anthony Nolan: We remove people from the register when they move abroad because we need to ensure we can contact our donors straightaway if they come up as a match, and unfortunately we can't do that when our donors move abroad.
If you were to move back to the UK, and were planning to stay here for at least three years, then we could reactivate you on the register (provided you still fell within the age limit and your medical situation hadn't changed).
The specialists from Anthony Nolan answering your questions were:
- Communications officer Ellen Marshall – general questions
- Head of special projects Guy Parkes – cord blood questions
- Donor spport supervisor Amanda Blum – questions about joining the register, exclusion criteria, etc
Last updated: over 1 year ago