I’m Dr. Navneet Majhail, the Director of Blood and Marrow Transplant Program at Cleveland Clinic. I’m partnering with Be The Match, the world’s largest bone marrow donor registry, to help save lives.
Every 3 minutes someone is diagnosed with blood cancer. 70% of blood disease and cancer patients eligible for transplant need a donor from outside their family. Bone marrow donation is often times their only chance for survival. You could be the one to save a life.
Be The Match is the world's largest bone marrow donor registry and facilitates life saving transplants for blood disease and cancer patients. We are growing our registry to help save more lives. Anyone ages 18-44 can join the registry, but we are particularly looking to increase our number of male donors age 18-24. Male donors in this age range are the best biologically suited fit for donors.
Joining the registry is easy. First, head to join.bethematch.org to create an account and answer our eligibility questionnaire. If you're an eligible donor, we'll ask for your contact information and you'll receive a simple donor kit in the mail. The donor kit includes detailed instructions about the process of our medical screening after you return your completed donor kit to Be The Match. From there, we'll enter you into the database. If you're matched with a potential patient, we'll contact you and provide high level information about your potential match and next steps.
Want to learn more? Head to: bethematch.org
Want to join the registry? Jump right in at: join.bethematch.org/DYDG
Are you an 18-24 year old guy, or want to learn more about the science behind the need? Head to: betheguy.org
EDIT: Thank you all for the great questions! Signing off now, BeTheMatchOfficial will answer any remaining questions.
If you consider the diversity of the human genome, there are a very large number of permutations and combinations of which gene's we inherit. Hence, even though the registry has ~15 million donors registered, we still struggle with finding donors for some patients.
It is also a matter of representation within the registry - certain racial/ethnic groups are well represented in the registry (e.g., Whites of European descent). Hence, despite the genetic diversity, just with the fact that there are more donors available in this group, the probability/chances of finding a donor is greater. The chances of finding a good matched donor is lower among patients who are from a racial/ethnic minority group that is not well represented in the registry. We also face issues with finding good matched donors among patients with mixed race.
Male donors and female donors who have not had a child are preferred. There is higher risk of a post-transplant complication called graft-versus-host disease (GVHD) if the donor is a woman who has previously borne a child. This happens because mothers blood is sensitized against the baby's blood (when the child in in the womb) - so even though we have may have an immune matched donor, we are not completely able to account for this "immune sensitization" that happens during pregnancy. As a result there is a higher chance of the patient (recipient) getting GVHD, where the donor cells are "hyperactive" and mount an immune attack against the recipient's normal tissues. Hence, the preference for male donors or female donors who have not been previously pregnant. However, at the end of the day, there are several factors besides the sex of the donor that go into making decisions about the best donor for a given patient.
What is the most common misconception about being a bone marrow donor?
Common misconceptions I have encountered are: (1) donation is associated with significant pain - there is some pain associated with the process, but most donors recover promptly and most donors do not need anything stronger than an over the counter pain killers. (2) donation will deplete my bone marrow or harm me - there are strict safety standards to ensure we do not harm the individual donating blood stem cells - there is a thorough physical exam and lab testing that occurs to ensure the donation process will be safe for the donor, and there are limits to how many blood stem cells are allowed to be collected. The donor bone marrow repletes in a matter of weeks.
Part of the misconception about pain could be related to how some TV shows have portrayed the donation process. Fairly recently the show The 100 portrayed bone marrow removal really gruesomely and I remember an old episode of ER that made it seem pretty awful.
Agree!! During bone marrow donation, before the procedure, the donor mainly feels an IV going into the arm - after that the donor is put under anesthesia - do does not feel any pain related to the procedure. Once the donor is woken up, they will feel some pressure or pain at the site of the pelvic bone from where the bone marrow was taken - in that setting, as I have mentioned above, most donors need ibuprofen for pain control.
They can obtain stem cells from a mobilized apheresis.
Mobilized apheresis is another way to get blood stem cells. This is where the donor gets an injection for 4-5 days (shot into the skin - like an insulin shot) - this medicine stimulates the bone marrow to make a ton of blood stem cells, that in very simple terms leak out into the blood. The donor is then hooked up by an IV to an apheresis machine (looks like a dialysis machine) - where the machine has filters that sucks out the blood stem cells and gives the rest of the blood back to the donor. Whether blood stem cells are collected from the bone marrow or from the blood (by apheresis) depends on a variety of factors - patients underlying disease and what would work best for the patient, and what may be safer for the donor.
What happens to me if I donate bone marrow? Any difficulty in life? I'd like to donate.
If you donate bone marrow - there is some immediate mild discomfort that occurs - see my post above that talks about the process. Most donors will recover from the discomfort/mild to moderate pain in 3-5 days. There is a small and very rare chance of some long term pain issues - but again it is not at all very common - there are several checks and balances to ensure the donor can undergo this procedure safely (physical exam, other evaluations, etc). You can learn more about the donation process here: https://bethematch.org/transplant-basics/how-marrow-donation-works/steps-of-bone-marrow-or-pbsc-donation/
What tends to be more commonly practiced: PBSC donation or bone marrow donation?
Overall, PBSC donation is more common than bone marrow donation. But at the end of the day which donor stem cell source we request for depends on a variety of variables - the underlying disease the patient has, how soon we want the bone marrow to recover after transplant, chances of getting immune complication called graft-versus-host disease (GVHD - see post above), etc etc. Sometimes, it also depends on the donor - the donor's doctor may recommend one over the other based on the risk to the donor (e.g., if the risk for anesthesia is felt to be too high for a donor, PBSC may be recommended).
Are certain demographics less represented in the donor pool? Would more people signing up from a particular group of people be very helpful?
Yes, absolutely! Donors from ethnic minorities are underrepresented in the donor pool. There was actually a very cool study that came out in 2014, that used BeTheMatch registry donor data to estimate the likelihood a patient would find a donor in the US. Here is the link to the study: http://www.nejm.org/doi/full/10.1056/NEJMsa1311707 Basically, this study showed that certain racial/ethnic groups (Eg. European descent) had the highest rates of finding a good matched donor, while minority groups (Eg, Blacks, Asians) had low rates of finding donors. There are concerted efforts by the BeTheMatch registry to try and recruit donor's from underrepresented populations into the registry - the hope is more the donors that are available, the more likely a given patient will be able to find a donor.
Do you have any stories you would like to share about your work?
I really love what I do - I get to see patients and their families who are going through a very hard time, with really life threatening diseases where the alternative is essentially death because of their blood cancer - and I feel honored that they have entrusted their care to me and my team. The fact that we can do this procedure and save their lives is a marvel of science and provides great satisfaction to me.
Doing a bone marrow transplant takes a team - it takes a village to get a patient through transplant. And I am really proud of the team of people I work with, who are highly committed to and experts in what they do - from nurses to physicians to social workers to nurse practitioners/physician assistants.
Here is a story I can share - many years ago, I had a young patient with bone marrow failure disease (bone marrow was empty - it was not making any blood cells - in medical terms, he had severe aplastic anemia). He was very sick, with many bad infections and other complications because of chemotherapy. He received a bone marrow transplant from his sibling donor - he is now 8 years out, really doing well, father of two beautiful daughters. Again, highlights the resilience, endurance and courage our patients have as they go through this process.
Hello doctor, when is the time that you can say a a patient has been cured from transplant?
As you live longer and in remission (without the disease coming back), the lesser the likelihood of your disease coming back after transplant. Things start to look very encouraging at 1 to 2 years post-transplant. Once my patients are at 5 years, I start getting more comfortable with using the word "cure". However, there is a very very very small risk of the disease coming back in patients who are >5 years post-transplant - hence the importance of regularly following with your doctor.
I am a 42yo female diagnosed with MDS. I have 12% blast percentage with 50% erythroid precursors. I have had 6 rounds of chemo in order to get my % down to 5 before a transplant. I am just wondering why it is important to get the number down if pre-transplant, I will have my own bone marrow destroyed with chemo?
Although it is not true for all blood diseases we transplant, in general, the lesser the amount of disease in the marrow at the time of transplant (e.g., MDS in your case), the greater the chances that the transplant will work and give you a successful outcome. This is the reason in our MDS patients with high number of blasts, we usually prefer that they get chemotherapy to reduce the "MDS burden" in the marrow before transplant.
I've been registered with Be The Match for as long as I can remember and never had a call, email, or telegram on being a possible match. How uncommon or common is this?
Hmmm - they have always been able to track me down when I have moved. You can go to this website and remind them where you are - I am sure their yearly reminders will start coming your way soon: https://bethematch.org/update-your-contact-information/ You can also call 1-800-MARROW2
As someone who is already on the donor registry (I signed up over a year ago at a blood drive), what's the likelihood that I (21, white, female) will be asked to donate? How does the process of reaching out to potential donors who are already on the registry work?
All depends on what your ancestry and immune type is - but there is a good likelihood you will be called.
Here is how the process works. If I have a patient who needs a bone marrow transplant, we will first look at the patient's siblings to see if there is a match (depends on number of siblings, but with the way genetics works, there is ~25% chance a donor will be identified from a sibling). If we are not able to identify a sibling matched donor, we go to BeTheMatch - they run my patient's data through their database of donors, and give us a report that spells out which donor may be a possible match. We then look at the donors available and usually pick the best possible donors and ask BeTheMatch to move ahead. That is when they will contact you (the donor) to find out if you are still interested, and will ask you to give a blood sample to confirm that you do indeed match to the patient - some redundant steps to avoid any mishaps and mistakes. After we get the information on the donor samples, we will finally decide which donor we are going to choose.
Sometimes, we will request more than one donor simultaneously - as for a variety of reasons, the donor may not be able to donate (change their mind, not available due to scheduling reasons, not traceable, have a medical issue that makes it unsafe to donate, etc etc). So you may be requested by the registry, but may not be asked to donate.
What are you thoughts on the increase focus on cell therapies? CAR T has been making news but there are other advances as well with graft engineering etc.
Bone marrow transplant is the oldest form of cell therapy - we have done it for 45+ years!! :-) However, there are several exciting new things on the horizon. CAR T-cells have caught the most media attention - since we have seen some very dramatic response in patients with really bad blood cancers that are refractory to treatment. There are several other cell-therapies - just by themselves or in addition to a regular transplant that are undergoing investigation. Examples including harnessing and modulating other blood immune cells (e.g., NK cells, regulatory T-cells), or selecting specific cells from the graft within the context of a transplant. So lot of exciting things coming in the horizon. But keep in mind that they are all very experimental - so we have much ways to go before they will be ready for prime time. But again, the good news is that there is a lot of research going in this area and things look very hopeful!!
Which ethnicities are least well represented in the registry, and what do you think the cause is?
Ethnicities that are underrepresented in the registry typically include Blacks, Asians, and Hispanics. I think there are several reasons for this - some of it is related to mis-perceptions about donation (some of this is cultural as well - I am Asian, so I can relate with that). Hence, there is a lower likelihood of signing up to be a donor, and greater attrition when a request is made for donation. Another issue is numbers - these races/ethnicities comprise a smaller percentage of the US population. Another issue is the genetic diversity in these populations - for example, Whites of European descent are a more homogenous population - compared to Blacks that may have ancestral origins in the Africas, the Caribbean, the South Americas, etc. BeTheMatch has several programs that are specifically targeting these populations so that they can be better represented in the registry.
How does the match software work to give someone the right recipient? Can you explain the brains behind the tech?
At the end of the day, it is bioinformatics - you can go to this website to see details https://bioinformatics.bethematchclinical.org/ It is actually very cool (I am sure I will sound like a nerd here!!). We have data on millions of donors - not only donor's HLA (immune) type, but also a ton of other variables - their age, sex, exposure to certain infections, etc etc. Then we feed in the patient information, and the software spits out the list of potential donors - it also gives us the likelihood that a given donor will actually match to a my patient (based on HLA types) - so I can optimize and choose which donors I will get the most bang for the buck - that is, have a good chance of matching to my patient. Time is of the essence, and we don't want to be wasting our resources and time on working on donors where there is a low chance they will actually match and be able to donate.
Thanks dr! That's fascinating - do you plan on launching the registry worldwide? We could do with one in India.
There are two small registries in India - one is http://datri.org/ and the second one is located through Tata Memorial Hospital in Mumbai. They still have a lot of work to do, but they are making slow but steady progress.
What are the laws protecting a donor if they have to miss time from work for donation and recovery. Also would someone who is constantly around germs (i.e. Work in a hospital) need to take additional time to avoid serious complications? Thanks for all you do.
Some states have laws requiring employers to provide paid donor leave. Some states also provide a state income tax credit or tax deduction for donation-related expenses, such as lost wages. Donors never have to pay to donate. Medical, travel and most non-medical donation-related costs are covered by Be The Match® or the patient's medical insurance. You can learn more here: https://bethematch.org/support-the-cause/donate-bone-marrow/donor-safety-and-support/donor-leave/
What are the pros and cons, both for the patient and the donor, for the different types of donation? What criteria decides if bone marrow or PBSC is used?
What does it mean when a patient has a rare HLA type? Is that relative to the registry or the general population? If they find a match does it mean that that donor is likely their only match?
When I donated PBSC I heard from an acquaintance that they had read a study about graft versus host disease that made it sound like it was better to find a donor with a slightly different HLA type. Is there any truth to this, and if so, what is the benefit?
First a simple answer to your several questions - for a patient who needs a transplant, we go ahead with the best donor that is available in the most timely manner. Let me try and address your questions one by one: 1) Pros/cons for patient - bone marrow recovers faster with PBSC, but there is greater risk of graft-versus-host disease (GVHD); bone marrow can take a little bit longer to recover with bone marrow, but there is less risk for GVHD. The decision of choosing the best graft source is very complex, but let me give a few examples. In situations where we really want to avoid GVHD (e.g., bone marrow failure diseases where we do not need an immune effect of donor cells on disease), we prefer bone marrow. There are certain diseases (e.g., myelofibrosis - scarring of bone marrow), where we need very high number of purified blood stem cells to help the bone marrow recover - we prefer PBSC in that setting. In other situations, we have clinical trials that show one may be advantageous over the other - so we follow the research in that setting.
2) Pros/cons for the donor - you can find excellent information here: https://bethematch.org/transplant-basics/how-marrow-donation-works/steps-of-bone-marrow-or-pbsc-donation/
3) Rare HLA type - we inherit our genes from parents, who got it from their parents and so on - so the "rarity" of HLA types is reflective of the population that is represented in the donor registry. Also, with our genetic admixture, sometimes the genes get mixed up in a way that there aren't enough donors that match the patients genetic signature. Also, we have the issue of mixed race - where there is genetic material from two separate ancestries - and that can also lead to issues with finding donors.
4) GVHD - at the end of the day, the outcomes are still best with a good matched donor. So there is no benefit for using a donor that is not a complete match. However, if there are no complete matched donors, we will use other donor options - e.g., a "mis-matched" donor.
With the staggering diagnosis rates you mention above, I, as a member of the registry, would think members would be called as potential matches more often than actually happens. Why is it so rare to get the call if so many people are in need?
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