Follow up to “Why are there age limits for registry members?”

Posted August 23rd, 2018 by Be The Match and filed in Donor Stories
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Dr. Dennis ConferFrom Dr. Dennis Confer, Chief Medical Officer, National Marrow Donor Program

Our blog post in 2011 about age limits for Be The Match Registry prompted a lot of responses from registry members. Many of them were unhappy, in some instances, really unhappy, about the upper age limit. Be The Match Registry only accepts donors between the ages of 18 and 60. Registry members are automatically moved to inactive status on their 61st birthday. We’re happy that the post generated so much thoughtful and vigorous discussion. It shows the passion and commitment of donors toward helping patients. I will try to address some of the issues.

Transplant doctors prefer younger donors for their patients

In our previous post, we stated that one reason for the upper age limit is to provide the best treatment for patients. Doctors weigh many factors when selecting a donor for one of their patients; the age of the potential donors is one of them. Transplant doctors want younger donors. This preference is also data-driven; there are publications suggesting that patients with younger donors do better. See for example, http://bloodjournal.hematologylibrary.org/content/98/7/2043. Need to add Kollman BLOOD, 14 JANUARY 2016 x VOLUME 127, NUMBER 2.
Some of it is judgment. It is very clear that the bone marrow ages just like other organs; the cellularity of bone marrow declines with age. You can’t get as many cells out of an older donor as you can from a younger one, and higher cell dose improves the chances of success.

Additionally, there are little parts of each cell’s chromosomes, called telomeres, whose length reflects the residual ability of the cell to divide. Guess what? — the telomeres of bone marrow cells get shorter with aging. If you do bone marrow transplants serially in mice, the bone marrow poops out when the telomeres are gone. Can bone marrow from a 65-year-old donor last another 45 years or more in a 20-year-old recipient? We don’t know, but a lot of doctors are reluctant to do the experiment. Most would like to put young bone marrow in young patients, and older patients, too, for that matter. Finally, it is also true that diseases of the bone marrow, like myeloproliferative syndrome, myelosdysplastic disease and acute leukemia, are diseases of aging; their frequency begins to increase around age 45 and continues relentlessly throughout older age.

World Marrow Donor Association standards

The NMDP is one of 67 donor registries around the world that participate in the World Marrow Donor Association (WMDA, https://www.wmda.info), an organization that facilitates international donation and transplantation, and promotes the interests of donors. WMDA standards require donor registries to stipulate an upper age limit not to exceed 60 years. In fact, many other donor registries have set lower age limits for joining: age 55 in Germany, 50 in Canada, 40 in Australia and in the United Kingdom, 54 in Japan. Most of these registries consider members already on the file eligible to donate up to age 60. Maybe the NMDP could work around this standard if there was a compelling reason to do so, but the simple fact is — no registry in the world keeps donors past the age of 60.

Age is a factor in a person’s health

We know there are many people over age 60 who are in excellent health. There are also many who are not. I talked about aging bone marrow above, but other health problems also increase with age. The rate at which potential donors are found medically unable to donate is highest in NMDP’s older donors. This higher rate of medical deferral matters because it presents a risk to patients. When the selected donor turns out to be unable to donate, transplant may be delayed, which can jeopardize a patient’s likelihood of success. Medical deferral often happens late in the process, when the donor is being “worked-up” for donation, and it is a huge disappointment for everyone. This is another reason that doctors like younger donors.

Hitting the age limit

I myself turned 61 in March, 2011. I’m no longer on the registry and I am righteously indignant about it. I started exercising 3 years before and I had lost 20 pounds. I am in the best condition of my adult life. That nobody wanted me during the 20 years I was on the registry only further irritates me. But in reality, I would not be a good donor. There are more than 200 people with my HLA type on the registry and they are all younger than I am. So, there are other ways (in addition to doing my job) that I will be making a difference — and other ways you can, too. Contributing money or hosting a donor recruitment drive may not offer the same joy and satisfaction that the opportunity to donate marrow would, but these acts are crucial to saving more lives. I am also encouraging my sons to join the registry. They are young men and can be members for a very long time. And it’s about time they did something that makes sense!

 

Last updated: August 23, 2018

141 Responses to “Follow up to “Why are there age limits for registry members?””

  1. Hal Issen says:

    Thank you for a well-written explanation. Repeating what I wrote it the previous blog: to those frustrated potential donors over 60, I encourage you to make an appointment to donate blood platelets. You can donate up to 26 times a years, there is no upper age limit, you WILL be helping to save lives, and it will make you feel good about your donation.

    • Sue says:

      Unfortunately, many women who have had 2 or more children are not eligible to donate platelets anymore. At least that is the case in the Tampa Bay, Florida area. I have previously been a platelet donor but can’t anymore. However, I do donate blood and most everyone can do that! 🙂

      • Linda says:

        There must be more to it than just having had two or more children. I dove donated since I turned 18, including when I was nursing both of my kids. Perhaps you received a blood transfusion?

        • Jan says:

          I agree with Sue. I used to donate platelets before, and sometimes whole blood too. Last time I signed up for Platelet donation, first I got qualified to do it because my iron content was good, but then the nurse said that because of my weight to height ratio (I’m a petite), plus the fact that I have two kids, I’m not qualified for platelet donation anymore, but I can donate whole blood. It is a new rule. This happened just a month before I turned 50 yrs old.
          Anyway, I’m happy that I had few chances to donate platelets, and planning to continue donating whole blood. My older son is 17 now, and he donated Red blood cells twice so far, through the school blood drive. I’m glad that I could be an example for him, just like my mom was an example to me.

      • Lorie says:

        Hi Sue,

        Women who have had two or more pregnancies have a greater potential of having an antibody in their plasma that may cause a lethal reaction in patients. At this time, they are being cautious and conservative for patients until further technology and testing can be implemented. Thank you so much for continuing to be a blood donor…someone out there really appreciates your precious gift and a chance for another day with their mother, father, brother, sister or child.

      • Deb Mull says:

        You are correct about women and platelet donations. I have been donating for 8 years and continue to do so. In our Ohio location the local blood bank tested all frequent female donors for the antibody. Those of us who were negative were allowed to continue to donate. However, no new female donors were accepted since the test is costly. They are waiting for a more reasonable test to become available so that more women can donate. I’m glad you were able to switched to whole blood.

      • Kathi Noonan says:

        I, too, can no longer donate platelets. I donate whole blood every eight weeks. What I don’t understand is, with the urgency required for a bone marrow transplant, by turning down a possible donor who happens to be over 61, aren’t the people getting the marrow in danger? If a person over 61 is the only viable donor, would a doctor turn that donation down in hopes of finding a younger donor? I wouldn’t think it would be a “pick and choose” situation.

      • Cyndie says:

        I had a similar experience, I had been donating platelets for years when I received notification that someone had a reaction from my donation. I was mortified to think that someone had gotten sicker because of me! After testing I was informed that I couldn’t donate platelets anymore but that I could continue to donate whole blood. Which I will do for as long as I can!

      • Tricia says:

        There is a test they can do to clear you to be able to donate platelets again. It has to do with antibodies that may be present in a female’s blood after a couple of pregnancies. At my most recent blood donation, I asked INOVA to take a sample for testing, which they did and noted in my personal file that I did not have the antibodies- so I am cleared for donating platelets. You should ask you local blood bank if they can do the same.

    • Nancy Hills says:

      As a platelet donor in her mid-50s, I also encourage all of our potential marrow donors to consider giving platelets a life project. It is not dramatic, but for those who receive the platelets, it is life-changing, which is also what we hope will be the case for marrow recipients. I can’t think of another area in which it is so easy to save dozens of lives over the course of only one year.

      I think it’s also important to remember that this really isn’t about us, and whether or not we feel passed over or left out by the fact that we weren’t ever chosen as a match for someone during our tenure on the list. It is about each particular patient, and what his or her doctor deems is best in each individual case. We can’t know those particulars, and so aren’t really in a position to judge. All we can know is that so far, data show that all marrow ages over time, regardless of how well we care for ourselves, and that younger marrow works better. And as far as the “no marrow vs. old marrow” debate, it is critical we not make our non-medical opinions and outrage at being thought old and therefore less worthy more important than a patient’s welfare. If we were the patient, would we feel comfortable having the course of our treatment determined by outsiders’ opinions?

    • Pat S, says:

      Today I turned 61 and I’m sad to know that my days of being a potential marrow donor have ended. I was called back some years ago for further typing, but was not a match for that person. I became an organ donor at the age of 17 after my cousin who was one year younger died as a result of liver damage caused by hepatitis that I believe she contracted through some contaminated food. When the laws clarified how living wills came into play with organ donation, I signed a living will. I will encourage those within my scope of influence to consider becoming a Marrow donor.

    • CM Smallboy says:

      I still do not buy the upper age limit. I can, and do in fact, also take part in registrys in both Cnanda and several in Mexico, Cenntral and South America. I am Blackfoot (Native American) and we are very short donors. My age will not eliminate me as a much needed donor anywhere else.

      No wonder US health care is so out of wack. Stop patting yourselves on the back and talking about your greatness and wisdom.

      • Ann says:

        Did you read the article? Other countries have LOWER upper limits. Don’t say US health care is out of whack because of THIS. Read the article and reconsider what you just said.

    • Carlos Rodriguez-Botet says:

      I agree and I donate whole blood every 2 months and sometimes even double red cell every 4 months but be very careful about donating platelets every week for so long.

      Your hemoglobin can go through the roof if you do it too often. This happened to my neighbor and now can’t even give it away because since her hemoglobin is so high even blood banks are turning him away. Make sure you monitor your iron intake.

  2. Joanne says:

    Thank you for the great response! Even at 47 after looking at all the statistics I know my marrow will be second choice if they find someone younger.

  3. Bruce says:

    I don’t think it’s a question of if a younger person’s marrow is perfered of not, it’s a question of if someone needs a doner and the only one is 61 or older, wouldn’t it make sense to use that marrow if it’s the only marrow match available??? It’s crazy if you don’t use it.

    • valerie says:

      i totally agree. i am 58 & workout, eat organic, no fast, packaged, or otherwise toxic foods. i really think i am more youthful & healthy than i was @ 50. there should be a more indepth test to use for functional marrow. i think lives are lost if we don’t get better testing of older donors marrow. some of us are very healthy, more than a fat, toxic food eating, smoking, drinking 30 year old.

    • Lou says:

      I agree. If my doctor told me the only known match was a 64 year old person who was no longer eligible because of age (assuming they were otherwise healthy) I would ask why I was being condemned to death. Personally, I’m 54, exerise regularly and in good health. Hopefully I can maintain that for the rest of my life. If the choice is an old Lou or nobody, where is the ethical problem????

      • admin says:

        Lou and all, please see Dr. Confer’s response below: http://www.bethematchblog.org/2011/05/follow-up-to-why-are-there-age-limits-for-registry-members/#comment-1825

        • Terri S. Erdman says:

          I just recieved my email notifying me of my ineligability as I turn 61 at the end of June. First, there are no bounds to my indignation. Even more so when you give me data on mice studies and theory versus at minimum retrospective human data, given the limited bone marrow pool for certain need groups. Given the lack of bone marrow pool for all in need, it seems reasonable to do the research necessary, and place those of us older than 60 on a secondary list for a salvage protocol.

  4. Donna L. Carroll says:

    Dr. Confer – Thank you for a well-written, understandable and personal article. At 57 yrs. old, I now see that my potential donor days are waning! I appreciate Hal’s suggestion of blood platelet donation and will look into that. I think one of the most important things we “older” people can do is to encourage the younger generation to become involved in the Bone Marrow Donation program.

  5. John D. Fleming says:

    Despite a very nice reply from Dr. Confer (thank you!!), the main issue remains unaddressed. In fact, the main topic keeps being completely avoided.

    If a patient is in desperate need, and the only prospective donor is over the age of 60 years, and the donor is apprised of the risks, and the donor is still willing to go through with the procedure, a life may be saved.

    Otherwise, barring a miracle or some medical technology not yet foreseen, a life will be needlessly lost. Let’s not pull any punches here: due to an arbitrary bureaucratic rule — the type that seems to surround most American medicine these days — people are dying senselessly.

    We need guidelines to be guidelines. The normal usage of the term “guideline” is a “suggestion”, not a hard and fast rule. Let’s change this poorly conceived rule to something that makes sense: cases involving donors over the age of 60 years should be evaluated on a case-by-case basis, and the arbitrary rule currently in effect should be abandoned.

    Until some good, sound reasoning is combined with a bucket full of compassion, this program — however noble its goals — will be viewed by many as a second rate effort.

    • Larry says:

      I couldn’t agree more. How many times do we hear of someone dying because a compatible donor could not be found in time? Even though there may be lots of individuals in the registry with similar characteristics, sometimes what it takes is that one perfect match. And what if the patient is a family member? What person over the age of 61 would be willing to sit idly by and watch his or her child or grandchild die when maybe that “old” bone marrow could do the trick

    • Rob Lane says:

      This is the most accurate question at hand. Could a life be saved? If the donor is over 60 they just let the patient die? This sounds like Washington type thinking. This would make me very upset to think my loved one died with a match. Even they don’t know if there are any major negative effects with the patient just that donors that age can have negative occurences. Even if the over 60 donor’s plasma only prolonged the life of the recipient one year that would be so worth it. Even IF something goes wrong with the older marrow they could maybe find a younger donor while the patient lives. Unfortunately the excuse “well everyone else does it too” sounds grade school. bethematch betheone to rethink this. Rob Lane

      • admin says:

        Rob, Larry and John, Thank you so much for your comments. Dr. Confer has addressed some of these concerns in his response below: http://www.bethematchblog.org/2011/05/follow-up-to-why-are-there-age-limits-for-registry-members/#comment-1825

  6. Yvonne Formel says:

    As a 52 year old runner of 25 years, I can only wonder if my marrow has aged the same way a sedentary 52 year olds has. I truly hope I can help before I am put out to the donation pasture. : )

  7. Kathy Carlton says:

    I am thankful for the clear answer but I tend to agree that an “aging” donor is better than no donnor and might give the patient the time needed to find a younger donor. If the younger donors are approached first then they would always be approached prior to someone over 61.

    I am fortunate that I was called once for more testing for a potential match. At the time I was 56. After a six month wait I was told I wasn’t needed. I was disappointed that I couldn’t help someone. As I approach the age of 61 I am disappointed that this is one more area I can’t participate in.

    • Janice says:

      As a BMT recipient, I would welcome an older donor match if that was the only choice I had. I think many others in my place would also. That being said, many do not survive the complications associated with MUD donations( matched unrelated donor).

  8. Janice says:

    Would a sibling to sibling match be denied if the sibling donor was over 60? My older sister was my donor 5 years ago. She is now 59, so she is getting close to that denial age. Just wondering?

    • Robert says:

      I’m no expert but the age limit is for being on the registry. If I understand English, that does not mean that a living related person over the age of 61 would automatically be disqualified.

    • Lisa says:

      I have been a BMT RN for 5 years. I had a patient with a sister who was over the age of 60. She was a match so they used her stem cells. She really wasn’t an ideal donor, but that was the only option. That being said, this particular patient had A LOT of complications. He had awful graft v. host disease. Post transplant, he spent a lot of time in the hospital. He spent more time in the hospital than out. I can definitely understand why there is an age limit. We want to give patients the best chance of survival. But I also understand the choices that are sometimes made when there aren’t many options available.

      • Janice says:

        I totally understand what Lisa is saying, but I am wondering if it was really the age that had anythinbg to do with the GVHD or if their HLA wasn’t as ideal as some. I have a friend that had a BMT 2yrs after me. His donor was an MD in his late 30’s and my friend has had terrible GVHD. He is still alive, but only has 19 % lung function due to GVHD. I have to tell you, I have truly been blessed. I am one of the fortunate recipients that has not had complications. Thank the Lord!!!!

      • Jan says:

        Complications, or certain death? Which one a patient will pick, I wonder.
        Lisa, Are those complications came definitely because of the donor’s age, or because the patient is not in a good health anyway?
        Thanks for sharing your knowledge as a BMT RN.

  9. John says:

    I fully understand the implications and/or complications and the lack of better benefits which arise from the marrow of an older donor. However, I am astounded that science measures all humans by the same yardstick (their age)irrespective of the health of their marrow.

    A few years ago, I was honored to be a donor and I was told that the recepient was in his late 60s/early 70s. If we are to use the age yardstick, the chances of acceptance and recovery at that age is not as good as those of a younger recepient.

    In my opinion, no one can guarantee much less accurately predict the outcome of a bone marrow transplant. Based on past outcomes, doctors nake informed outcome predictions but at the same time tell families that theres always a chance for failure.

    For most patients contemplating a bone marrow transplant, the alternative is near-certain death. Also, partial match can lead to more complications than benefits. However, to shut out a donor just because he or she turned 61 is, in my opinion, is pre-mature. As Dr. Confer mentioned, he is in a very good health status now than he was just before he turned 61. That speaks volumes.

    If I was a person awaiting a transplant and the only available match was someone over the age of 61, I would want to know and get to decide if I wanted to take a chance with it or not. After all its my life.

    • Janice says:

      I totally agree with John. I would want the option of deciding for myself…transplant or certain death without transplant.

  10. Mark Riedo says:

    Well stated John..
    Why not have a data field in Marrow Donor Data Base for PREFERRED DONOR (for those under the “60 year” limit) and another field RESOURCE DONOR (for those over the “60 year” limit. HLA should be the primary sort criteria. then other criteria. No donor should be removed from the registery just because of age.

  11. Linda Dettmer says:

    Hmmmm, seems to me old marrow is better than no marrow and as I age toward the age of being excluded from donating it frustrates me to know that I would be willing to have extra marrow harvested if possible from anywhere in my body to give some younger person, older person, any person, a chance to have a few more precious days.

  12. John H says:

    How can I say any better what has already been said that an old donor is better than no donor and a dead patient. By all means evaluate the donor pool and choose the best candidate, but to exclude based on age alone is so disheartening. I still have about ten years left in the pool, and I dread the day that I will be inactivated solely based on my birth date.

    • Maureen T. says:

      The age factor makes sense, but I share your concern. Since finding a suitable donor is not an easy thing by no means, I wouldn’t want to think of the possibility of becoming a perfect match the day I turn 61. In all likelihood, however, the odds of that happening are rare, so I trust that if I were meant to be a donor, fate would intervene before I reach that age. I also trust that transplant doctors are committed to making the best decisions for their patients. They want them to live as much as we do.

  13. Dale Chock says:

    Almost every sick person, if told their life could be extended just two years, just one year, just six months, would take the brief extension. Not only that, but tiding a patient over with feeble marrow would *buy time* in the search for that young donor with the vigorous marrow. Yeah, Dr. Confer totally doesn’t acknowledge the point that half a loaf is better than none.

  14. Cathy Salazar says:

    I am pushing 60..REALLY pushing it..and I am as healthy as a horse..why in the HECK wouldn’t I WANT to donate to save someone’s life..what do I need to hang on to my marrow for…take it with me when I go????

  15. Pamela Ferguson says:

    I wonder if it would be of any use, especially with an aging population, to create two ‘pools’ of donors, with the older pool being available to older recipients? That way the older marrow wouldn’t need to survive another 45 years, as Dr Confer mentioned would be preferred for a 20 year old recipient.

  16. Jim says:

    I’ve been on the registry since 1988. Last year I battled a lung disease called coccidioidomycosis (Valley Fever). The disease is now in remission. Does anyone know if I would now be disqualified from donating marrow?

    • admin says:

      Hello Jim,
      If you are fully recovered (no longer being monitored by your MD and no symptoms) and with no residual lung problems, you can remain on the registry and would be evaluated by a doctor if you are ever selected as a possible match.
      Thanks for checking!
      Be The Match

  17. steve green says:

    So I have read all the posts after the publication of the two articles. Like some of the posters, it seems such an utter waste to withhold a year to two’s life just because some teeny weeny piece of DNA, or whatever, might not split apart as fully as younger ones. Hey, even it it worked for another few months, years, or whatever, it would have been worth the inclusion in that person’s life.

    You docs know best, so it’s been told, but common sense from folks like me seem to think that any chance of increasing the odds (someone’s life) are worth a try.

  18. Becky says:

    I became a donor last year after a family member died of Acute Myelogenous Leukemia (caused by environment, not heredity), and a friend’s toddler is currently battling ALL. When my dad was dying, he was (clearly) too old at 85 to be eligible for a transplant. This discussion got me wondering – what is the ‘ceiling’ to be a recipient? I hope it’s over 60 and not the same as being a donor – so many people today live well into their 80’s or beyond, that seems like a low ceiling if it is in fact that low.

    The science behind the donor ceiling makes sense – you want the best outcomes.

    • Mickey says:

      I have a dear friend who needed a BM donation after being diagnosed with leukemia. At the time, she was 65+. She is a nun who had been tirelessly running a homeless shelter and medical clinic for many years. She was initially denied a transplant because of her “advanced” age. Fortunately, many prayers were answered and she was finally able to receive the transplant. The idea that 65 is too old to try a transplant is discarding the prior health and contribution of an individual. These life saving procedures aren’t wasted on those of us who are getting these diseases later in life. By the way, my friend continues to run the clinic and shelter and she is well into her 70s.

  19. Kimberly B. Duke says:

    Medicine is undergoing dramatic changes, and one of the most profound is the shift from “paternalistic medicine” (doctor knows best) to “patient-centered medicine” (patient knows best). Just as important as any technological improvement is the imperative that society allow PATIENTS to make the final choice about their treatment.

  20. Kari Z says:

    I’ve been on the list for about 17 years now and didn’t know I had an “expiration date.” Makes me sad because I’ve never once been needed. I just turned 54 so maybe before I expire I’ll be put to good use!

  21. Avon says:

    I too agree with Bruce, John and the others who say that a 61-year-old matching donor is better than none – and none is what the recipients can get about half the time.

    Sure, let the transplant doctor and the patient decide … but what if their decision is to try for saving a life?

    I sympathize with the Program and Dr. Confer, if medical safety standards and international rules require them to overrule the patient, her/his doctor and the willing donor on this. If I were Dr. Confer, I’d be indignant about a lot more than just being 61 myself!

  22. Gayle says:

    I was a donor last May and turned 60 in October.

    I am in fairly good health and was able to donate way above what the recipient’s doctor had requested. I was able to donate in one sitting.

    I think each case should be dealt with separately. Some older people willing to donate can do it easily.

  23. Mary says:

    Let’s think outside the box. Have 2 lists, under 61-over 61. I would rather have “older” marrow than none at all if there was no other match.

    I also think that the other countries with lower age limits are really sell there citizens short by reducing the potential donor pool so much.

  24. NJ says:

    At 51, looking 41, in better shape than most 30 year olds…it’s silly to think I would be cast aside simply due to age when all other factors would indicate an extremely healthy donor, esp if no younger donors are available.

    Perhaps at one’s 60 b-day checkup, doctors nationwide can create a Potential Donor report that addresses this issue.

  25. Tom says:

    Dear Dr. Confer,

    I know your article was to try and make us feel better that your just going to sit back and let people die just because I hit an arbitrary age, from the msg’s so far, your conscious may be better, but it does little to help ours.

    Certainly younger might be better, and we understand your going to look at blood relatives 1st, however there is no delay in donation. You have already looked at better possible donors, by the time you get to me a non relative, I am already a last resort. If I am no longer healthy enough then you haven’t delayed donation as you should be testing all possible matches at our level at the same time. If I am no longer healthy enough, your delay is just a little money waiting for someone who may never come.

  26. Ken says:

    I wonder if there is a way to find out how many donors share a matching HLA type. I turn sixty in a couple of weeks and find myself a bit disappointed that it looks like my marrow won’t find its way to someone who needs it. I’d hate to think that the registry is struggling to find a match as I grow no longer qualified. I appreciate the reasoning but, “Sheesh”.

  27. Nancy B says:

    After being on the list for over 20 years as a donor I received a call that I was a perfect match for a 34 year old male with leukemia. I was so excited and felt truly blessed to donate on July 1, 2010. I may never meet or know my recipent but that is not important. I am turning 60 in a few days June 22, 2011 and this miracle match may not have happened they are saying if it was a year or so later. My heart aches thinking about it. Especially as I reread the letter I received from the receipent of my bone marrow. He said his bone marrow is producing cells right away since the transplant and it is as if we were twins. I had written him a letter sharing my feeling about being his donor and he responded when he was well enough sharing that it was difficult to write to an unknown person who at the same time is so close to them. He said He owes his life to me. You don’t think about that when you donate you just do it because it is the right thing to do.

  28. Mel says:

    Isn’t there a way to test a donors telomeres? Perhaps an older donor could still have long telomeres and thus be a good candidate.

  29. Roy Piwovar says:

    If I were in a position where I was in dire need of a donor and had nothing to lose I would want the option of choosing from any matching donors over the cutoff age if they were the only ones available. I don’t think I’d be alone in wanting that chance.

    http://www.sciencedirect.com/science/article/pii/0047637482900604

    • Pita Mann says:

      I wonder if the experiment was ever replicated. It was done in 1983, so more should know about it, surely.

  30. chris says:

    As a marrow donor for a sibling 27 years ago and a transplant coordinator for 12 years, I totally understand both sides. I have 10 years left on the registry but understand that I am not likely to get the call. I search for donors based on the criteria that Dr. Confer so eloquently explained. For a related donor we generally go up to age 65 but have gone older on a case by case basis. To choose an unrelated donor over the age of 60 with the added risks of an unrelated donor transplant in the hopes of buying time until a younger donor might be found isn’t a good idea. The patient is not likely to get a second transplant because of toxicity or potential complications from the first transplant, not to mention insurance coverage issues.. A partial matched (haplo) related donor transplant is an option for those who don’t have a matched family or unrelated donor. For those who are going to “age out” of the registry, there are so many ways to help as noted in this blog. Thanks for your passion and support for transplant patients everywhere.

  31. Pita Mann says:

    Thank you to everyone, regardless of chronological age, for your willingness to be of service to those in need of bone marrow. I’ve been on the registry for more than 20 years, and I’ve never been needed, but I know I would donate at any time up unto my 61st birthday. Hate to say it, but when people turn 60 they’ve been alive 60 years–just saying….

  32. Alice says:

    Would the possibility still exist for donating peripheral stem cells? Could someone over 60 donate them for research purposes?

    • Janice says:

      I believe that most donations are periphereal stem cells, so the cut off is problably the same. I don’t know about the research part, though.

  33. Sheryl says:

    Thank you for this valuable information. I was contacted as a potential match for a 13 year old boy last November. I was heart broken when he did not work out for whatever reason. I still have 4 years left on the registry and have been on it since 1996 so there is still hope.

  34. Rhonda C. Meeks says:

    I WAS **TOO ANGRY** TO REPLY TO THE MAY NEWSLETTER ABOUT THE 60-AGE LIMIT AT THE TIME, BUT I WAS GLAD TO SEE THAT OTHERS TOOK THE TIME TO SPEAK FOR ME. IN ADDITION, I AM HAPPY THAT DR. CONFER CONTRIBUTED ADDITIONAL COMMENTS SO STEAM IS NO LONGER COMING OUT OF MY EARS. AT THE AGE OF 48, I’M JUST GOING TO HAVE TO ACCEPT THE FACT THAT I ONLY HAVE THE POSSIBILITY OF DONATING ANOTHER 12 YEARS (UNLESS THE RULES CHANGES……..)
    :):):)

  35. Bob Lincoln says:

    I’m 50 years old and very, very disappointed that I only have 10 years left on the registry. I registered in 1990 at age 29, and have been called twice for further testing. The first time I was told that the more definitive testing showed that I wasn’t a close enough match. The second time I was told that I was no longer needed, which either means a closer match was found, or the patient died waiting.

    I’d like to think that this policy will change before I hit 60. I’m in better than average health. A lung capacity test performed for my job showed that my capacity is 30% greater than average for my age. I fathered my child at age 44 with no defects. Longevity is a trait in all branches of my family, typically most live to between 80 and 95, with good physical capacity up to the end. I also feel that an aging donor is better than none, if no other match can be found.

    I started giving blood at age 18, and am up to 123 pints (15+ gallons). The Red Cross originally had a cutoff at age 65, but quite awhile ago lifted it, and anyone can give right up to any age if they are healthy. Because the restriction was lifted, my dad was able to give for the first time at age 65, and several times more. So there’s hope for recognition of continued good health, and the capacity to give hope and life to others.

  36. Kent0242 says:

    I found this article to be informative and well written.

    Unlike one of the comments posted that said the 60 age limit was an abitrary number, I tend to agree with the standards and guidelines. Arbitray number? I don’t think so, given the ages that other countries set for the same procedure.

    How come I don’t hear the same indignance when blood drives don’t accept a 12 year old’s blood donation? Because common wisdom prevails in common people and science backs this up.

    In the case of bone marrow transplant, scientists and doctors have worked side by side for decades to initiate a program that is both safe and effective. Lets allow them to continue to promote both safety and effectiveness, even after we pass the age of expiration.

    I for one am satisfied that I stood ready all these years and for one reason or another, was not selected to be a donor. No tears here!!

  37. Hope Rabinovitz says:

    Interesting that all the annoyed comments are about YOU not liking to be considered old at 61. This is not about you, but what is best for the recipient. Let’s not forget that. I would suspect the transplant specialists know what they’re talking about and statistics have shown better survival with younger cells. If I were recipient, I’d want cells that are known to last longer if I’m going to go through the trauma of a transplant. I’d want my best shot for good suvival. Just saying……

  38. Dave King says:

    I am in great relative health to a possible match and recipient. If you want to use the hand grenade method to exclude donors, then you are denying life to to those who desperately need what I am willing to donate…regardless of my age. You should use a scalpel to deny donors.

  39. Ron Bissinger says:

    I completely agree that the age guidelines appear arbitrary. It also appears that the science backing up such guidelines is not as robust as it should be. As many other age-related guidelines have recently been questioned (mandatory retirement ages for pilots, for example), so should these. As long as people continue to die from lack of transplants, guidelines limiting the donor pool need to be constantly examined. The solution, unfortunately, may not reside with the fine people who do a great job running this registry. Perhaps getting a representative in congress to push the National Institute of Health, for example, to examine the issue would result in guidelines that can stand up to scrutiny and set a precedent for use worldwide?

  40. Jonathan Katz says:

    An older donor is better than no donor. Judgement calls are made with respect to immunocompatibility, which is never perfect except between identical siblings. Donor age should be considered (as is recipient age), but should not be a veto.

  41. Shawn says:

    do the results vary with the type of donation? the regular vs blood based?

  42. Nick says:

    Dear Dr. Confer-
    I think everyone realizes that younger is preferable to older in this circumstance. With all respect, what I’d like to know is WHY you don’t even address the issue of- “a guaranteed-dead patient is preferable to using an older donor if no young match can be found”. I’m pretty sure I know the reason, and that it’s fear of liability in the lawsuit-happy world of today.
    Imagine the person you love most in the world, and that person has a terminal condition that could be quite possibly be fixed by a 62 year old donor. Assume there are NO younger donors that are even close to a match. The patient is told- “Sorry, rules are rules. Make your final arrangements.”
    Seriously, how about some candor on this scenario? I truly hope I haven’t offended you, but I can see by reading these comments that I’m far from the only one here that is frustrated by this.

    • admin says:

      Nick, Thank you so much for your comment. Please see Dr. Confer’s follow-up response below: http://www.bethematchblog.org/2011/05/follow-up-to-why-are-there-age-limits-for-registry-members/#comment-1825

  43. John says:

    I understand the feelings of those who are frustrated. But you need to think about the issue from multiple perspectives and consider the pros and cons of any donation.

    I’ve “known” two people who died at young ages after a donation as a direct result of complications due to the transplant itself. The first was with a 25 year old donor. The second was with a donor in his late 30’s–me. While there’s no way of knowing for sure what would have happened long term if these patients hadn’t received their particular donations, it is guaranteed that both of these two patients would have lived longer an–ironically–healthier lives if they hadn’t gone through with their transplants.

    Just because there is a match (and both of these were perfect matches) does not guarantee a good outcome. Just like the patient, any donor should very seriously consider the possibility that their donation may not produce the outcome that they’ve dreamed of for their recipient. If the statistics show that donors over a certain age are less likely to produce good outcomes regardless of their health, then there is no rational reason to fight this just for the opportunity for you to be proud of yourself.

    I’m sorry, but while I do understand where these feelings are coming from, objectively many of the sentiments above sound rather selfish to me. Remember, it is not your life that is on the line here.

  44. Carl Cushman Hybels says:

    I’m with the many other people commenting here and in May that in sum the Bone Marrow Registry needlessly has alienated and is alienating thousands of people over 60. (See the comments). What does it cost to keep an over-61 yr old on file -but not access him/her unless he/she is the best/ or the only match? Micro-pennies for e-mails?
    Doctors prefer younger donors when available, so the process self-selects for younger, without needing to exclude.
    Dr. Confer’s resentment he says (excellent point to share) was reduced by his learning there are 200 potential donors nationally with his marrow profile. Is this knowledge accessible? As for him it would help people getting older to know if there are others with their profile.
    The Registry’s insistence on excluding older people, irregardless of whether they may be/ become a unique life saving match, flies in the older person’s face and works counter to the long term core of the Drive’s motto: “You may be the one.”
    Apparently, the motto is, “Sorry, you are not allowed to be the one.” Or, “We don’t care if you are the one.”
    No wonder there is resentment.
    Again, needlessly. As others have suggested: for smoother relations, make two lists: “Preferred” (under 60) and “Available if called to be the one.” Or, simply, don’t exclude by age. Let the practicalities (younger will be preferred) operate; except as appears in certain cases already the case, in closer relations over 60 where the person is a unique and life-saving match.

  45. Toby Gordon says:

    I was a stem cell donor for a sibling five years ago when I was 47 years old. The first day of apheresis went well but I didn’t provide enough stem cells (maybe because of my age) and had to do a second day of apheresis. Day two was very difficult. BMT can be unbelievably difficult for the recipient. My brother had to be on morphine continuously for two weeks because the chemo was so destructive. Honestly, having seen what my brother went through during his struggle with AML (treatment-wise), I don’t know if I would do it. As far as the age limit for donors, I don’t see it as paternalistic -I see it as a way to put the odds in the recipients favor.

  46. J J Benchich says:

    I was 59 and was very close to 60 when I donated. The comments from the attending staff was the donation testing of the draw was excellent and exceeded all the standards. I recently provided T-cells for the patient and again, the results were excellent. As I told my coordinator, although I am approaching the 61 year cut-off, if I am the only match for the patient, I would be willing to donate again. If the only option for the patient is to die, I think he might be willing to take some old cells.

    As noted in the other comments, THEY ARE LISTED AS GUIDELINES. If common sense and professional judgement does not enter into the decision making process, why are all these doctors getting paid so much for their work? Since my receipent is 52 years old, I don’t think he is concerned about the “long term” complications referred to in the follow up response by Dr.Confer. I know if, at my age, I could be around from one more birthday of my grandchildren or one more aniversary with my wife, I really don’t care about the long term implcations of some old cells. To allow someone to die because the potential donor is over 61 is inexcusable.

  47. Carey says:

    The initial feeling I felt after reading last month article left me disappointed. Reading the followup article provided me with the oppurtunity to now add the feeling of anger. I am cancelling my membership in this program that prtactices “one size fits all” medicine and policies.

  48. Tim says:

    An ill or dying person is not going to care if the donor is 16 or 61 if this person’s marrow might or does save their life!

    People are living longer and many keep themselves in good shape so one size or age in this case does not fit all. The age limit needs to be revisited with and the term guidelines are not meant to be absolute directives so the term guidelines should mean just that a ‘guideline.’

    I am 50 and a member of this registry since the late 1970’s or early 1980’s and I have never been called and I have no ill will regarding this but I can see that the law of averages might catch-up and someone will or may need my help on or after my sixty-first birthday. If these cutoff rules are still in place at that time in history then it is very likely someone’s doctor will allow them to die because of an outdated guideline.

    Regards,

    Tim

  49. Valerie says:

    I can see the doctor’s points. A younger donor would be better all the way around for survival chances of the patient. That being said, as others have said – if you are the only option for somebody who will DIE unless they get a marrow transplant with your marrow, it’s better than nothing, and I would devoutly hope that even though you are listed as “inactive” once you hit 61, your name and HLA would still be accessible on a search, such that if you were the only option, it would be a choice for that person.

  50. Karen Robinson says:

    I am a blood donor, platelet donor, and live KIDNEY donor (last July). I will be 60 my next birthday and hate to think I am now useless to you based on a number. I am also a hospice nurse and have NEVER had a patient say on their death bed that they would are glad they did not receive a transplant because a potential donor was TOO OLD. If I were told I would die without a transplant, I wouldn’t care if the donor is 60 or 110. I think patient’s should be given then information that a possible donor is OLD and let the patient decide if he is willing to take the risk of living!!!

  51. Julianne says:

    Once again, most people commenting on this thread are offended because they cannot participate on their terms and conditions. Sorry, there is no nice way to put this – how sad you will not help AT ALL if the help is not on your terms and conditions. You knew the rules when you signed up – or were you too busy thinking how altruistic everyone would think you are?

    Dr. Confer is a DOCTOR and a Chief Medical Officer. As far as I can see, nobody else is. Medicine is not perfect (is anything?) but is based on scientific fact and years of experience. The patient does have a say but generally does not have the knowledge and expertise to make the best medical decision.

    I agree that every patient should be given more time and transplants give some patients more time. The transplant process is awful – anybody who tells you otherwise is incorrect. Until you have experienced this with a family member or friend, you will never know how hard it is. NEVER!

    Please consider putting your judgement and personal feelings aside to help those in need. After all, isn’t this ALL about the needs of the recipient?

  52. Douglas Dinnebeil says:

    This Back n’ forth has expressed every emotion I have about the upper limit, and I understand it and appreaciate all the conversations. I had sent in an immediate responce when the article first came out. I have cooled down, a little.
    I will continue to wish I was a match, but in the mean time I will resign myself to just give blood, they still want me.

  53. Tom Fitz says:

    I think it would be cruel to find a match to save a life then decline it because of an arbitrary number.

  54. Kathy says:

    I have less than a year to donate and it makes me sad. I wish I had known years ago when I was younger how easy it was to become a donor. I would have loved to have been able to give someone a second (or more) chance at life. I understand the reasoning as to why you put the age limit in place, but it still makes me sad.

  55. Larry says:

    I’m hoping Dr. Confer will join this conversation and reply to the sentiments being expressed here.

    “…the main issue remains unaddressed. In fact, the main topic keeps being completely avoided.

    If a patient is in desperate need, and the only prospective donor is over the age of 60 years, and the donor is apprised of the risks, and the donor is still willing to go through with the procedure, a life may be saved.”

    • admin says:

      Larry, Thank you so much for your comment. Dr. Confer has tried to address some of the concerns you and others have raised in his response below: http://www.bethematchblog.org/2011/05/follow-up-to-why-are-there-age-limits-for-registry-members/#comment-1825

  56. Sue says:

    I guess I’ll have to pray for the opportunity to donate soon. I’ll be 60 next February

  57. Doug says:

    I was a bone marrow donor at age 59. The process went well, and, while my recovery was slower than I had anticipated, I was back to normal in several weeks. (The adult donor required a large quantity of marrow which I was able to fulfill.)
    I am now 61 and would gladly donate again if needed. I understand the reasons for the age restriction, but as others have pointed out, bone marrow from a 60+ individual is better than nothing.

  58. Theresa Young says:

    I have just come from donating platletts for the 157th time. More than some less than others. I have been in the registry for more than 25 years and have just turned 60. I have never been called to be a donor but would be willing to stay on a “reserved” list past my 61st birthday. I know that the doctors know more than I do about the process and success rate.

    I will continue to donate to the Red Cross and will encourage my daughters to register to take my place for the next 30 years.

  59. Cheryl says:

    Unlike most, I had no adverse reaction to the upper age limit placed on donations. I understand the medical rationale for them and really didn’t question it. However, I think the idea of a “preferred donor” list and a “resource donor” list makes perfect sense for those in need who can’t find a donor under 61 years of age. At least that would give them, their family and their doctor some options and the ability to make their own decision.

    However, to those of you who say they will now remove themselves from the donor list because of the age limit I ask you to please think of what you are doing. By removing yourselves from the list while you are able to donate, you may be condemning someone to death who would have lived because You were the match!! Please, please think about this before you do something that you may regret later.

  60. Sue says:

    If the choice is between an older donor and nothing why not look into the older donor? They could still be a backup if no younger donors are available. Even if their marrow doesn’t last 50 years it might just keep the recipient alive so that later they might be cured or treated. They should stay on a secondary list.

  61. John says:

    So many people on this thread have written something like “If the choice is between getting ‘old’ stem cells and getting none at all, then why wouldn’t anyone choose to go with the old donor?”

    Patients always have choices. The transplant process sucks (we’re talking about them, not you). The transplant process will make you very sick. The transplant may save you. The transplant might kill you prematurely.

    The doctor might tell you that there is a 50% 5-year survival rate for your type of cancer without a transplant. Let’s say a donor is located. The doctor might tell you that with this particular donor, there is a X percent chance that the transplant itself will kill you within 6 months (not to mention the 100% chance of feeling very sick for at least a month). Wouldn’t your choice of whether to go through with the transplant be based on what number “X” is? The point is that “X” goes up as the age of the donor goes up. It is perfectly legitimate for a patient to choose not to go through with the transplant.

    In short: Is an older donor better than no donor at all? Not necessarily.

    To those who say (shockingly) that they are removing themselves from the registry just because of the age limit: you are being incredibly childish and selfish.

  62. Bill Mielke says:

    I will admit I was upset when I found out there was an upper age limit. I’ve been on the registry for more than 15 years and was called twice for a blood sample but never got past the first cut. And I agree with all of you that it would be so cool to help someone in this most intimate way. That being said, I would urge you to consider donating platelets and plasma. There is a larger demand for these products. And if they call me and I am 110 I will be there before they hang up the phone.

  63. Diane Black says:

    I honestly do not understand why people would be upset that they had not been called on for marrow donations. Most of us are on the registry because we believe that this form of service to our fellow human beings is a good thing. But to get upset because someone doesn’t need you? That’s almost like wishing there was someone out there that was sick! I’m 54, and my days on the registry are limited, but I certainly do not feel that my registration and participation have been a waste of my time. If nothing else, it has allowed me to be an example to others so that they, too, can join the registry – which is also a form of service.

  64. Terri says:

    I understand the age requirements but as I reach the 61 age mark I am sad that in the 15+ years I have been registered that I only came close to donating one time. I didn’t get past the 2nd stage of matching. I feel very strong about people registering to be donors even though no one in my family has ever been in the position of needing a donation.

  65. Belinda Lopez says:

    I also believe that age is but a number and that just because a person is turning 61 they should be excluded from being a potential donor. But, Taking all of your opinions into thought we are missing a factor that will save lives. There is a pool of donors that are willing to give a piece of themselves to allow another to live a healthy normal life. These donors are in the 12-17 age group. They have been excluded and denied only because they are under-age. If they were a given the chance to rise to the call, show their humanity. Their gifts would allow one to live another 50 to 70yrs before or never needing a another transplant. The issue has always been that there are not enough donors out there that are willing to go through the process for another human being. I have two children that fall with in this age group who are willing to give of themselves and were very devastated when they were told that because of their age they could not be donors.

  66. DeLana says:

    Actually, blood banks have far more restrictions on donors than the bone marrow registry does! I was permanently banned from blood (O neg) and platelet donations for the extremely remote risk of exposure to “mad cow disease”; I was 39 at the time. This 2002 FDA rule excludes thousands of perfectly healthy blood and platelet donors.

    To my great surprise, I was still eligible to remain on the marrow donor list (which tells you something about the real mad cow disease risk), so that’s the only way I might possibly be able to contribute.

    As to the upper age limit, I have to agree with many others that a younger donor is always preferable. However, it would be a good idea to have a separate list of “last choice” donors (isn’t there a list of inactive donors, anyway)? If there is truly no other match, and someone a few weeks after his 61sth birthday matches, why not possibly use him or her? It’s not like there’s a huge change in marrow quality from the day before the 61st birthday to the day after.

    • Cass says:

      Like you was banned for same reason. They say 20-30 years incubation possibly but it’s been longer. They need test to test for it

  67. Bob Lincoln says:

    Julianne says:
    June 17, 2011 at 1:40 am

    Once again, most people commenting on this thread are offended because they cannot participate on their terms and conditions. Sorry, there is no nice way to put this – how sad you will not help AT ALL if the help is not on your terms and conditions. You knew the rules when you signed up – or were you too busy thinking how altruistic everyone would think you are?
    —————————
    A resounding “WRONG!” to you, Julianne. As most comments indicate, most are saying that an old donor is better than certain death. We are NOT saying that we should be one of a pool of younger donors, or we won’t donate. We are saying that the patient should have a choice, if we are the ONLY donor that matches, to choose us or not choose us. What I’d like to know is, would a patient ever be made aware that there could be an older donor? Or does the registry conceal that information and make the decision for themselves? I believe that the patient has the RIGHT to know ALL options. It could be the last major decision they ever make, and it is being made for them.

    Finally, to the comment that we “knew the rules when you signed up – or were you too busy thinking how altruistic everyone would think you are?” – let me say that your sarcasm and arrogance are disappointing. Yesterday was the very first time in 21 years that anyone told me there was a cutoff at age 60. We were NEVER told this when we signed up.

    • Nick says:

      Excellent points well phrased, Mr. Lincoln! I don’t think it’s asking too much for Dr. Confer to address this topic in a straightforward manner. Everyone here is an altruist that wants to help- nobody is looking to be pointlessly angry at anyone!
      Namely-
      (A) Why is certain death preferable to a treatment with elevated risk?
      (B) Why should the patient not be told all the options?

      • admin says:

        Nick and Bob, Thank you so much for sharing your concerns. Please see Dr. Confer’s response below for some additional perspectives on this topic: http://www.bethematchblog.org/2011/05/follow-up-to-why-are-there-age-limits-for-registry-members/#comment-1825

      • Peggy Moore says:

        I am inactive now for bone marrow donation due to age.
        I am curious why my marrow could not have been taken and frozen for future need. I did not see an answer to that in anything I have read.
        Thank you,
        Peggy Moore

    • Julianne says:

      Bob,

      My sarcasm was intentional.

      I encourage you to read AnnMarie’s comments below on June 18, 2011 at 11:51 am. She is a physician, has taken an oath very few appreciate and very eloquently explains why physicians make difficult decisions.

      You seem very passionate about this. Perhaps you have the time to become an activist for change. People have successfully changed medical policies and influenced lawmakers to drive changes that save lives.

  68. Mitch Williams says:

    Thanks for the clarity and explanation. I understand it’s for the best and will continue to support Be The Match in other ways.

  69. Deborah Santone says:

    I have been on the registry 25+ years and will be 60 in a few weeks, but I’ve never been called on. Although I regret losing the opportunity to help someone after I turn 61, I think it was made abundantly clear when I first signed up for the registry, and in subsequent communications from NMDP, that 60 was the upper age limit. So I can’t understand why so many registy members seem surprised by this now.

    I appreciate and understand Dr. Confer’s further explanations. It’s hard to feel we are (or at least our telomeres are) “over the hill” but hey that’s the reality of life.

    I do think since this issue has been raised and so many donors are upset about it, NMDP should specifically address the question so many have asked: when there is no under-60 match, what are the reasons that would argue against searching for a match on the inactive list as a last resort (assuming the patient wants to)? I suspect it may come down to $$ and resources spent versus the lesser odds of success with an older donor.

    If I am honest with myself,I think I’ve always had this romantic feel-good fantasy about saving someone else’s life, and the upcoming age limit will cause me to relinquish that dream. But we all have to grow up and face the inevitability of our own mortality. I think fear is at the root of some of the angry emotional reactions expressed here.

    I agree with others who have said: help in any way you can going forward, even if it’s not as a transplant donor.

    • admin says:

      Deborah, Thank you so much for your comment. Dr. Confer has shared some additional thoughts in a response below: http://www.bethematchblog.org/2011/05/follow-up-to-why-are-there-age-limits-for-registry-members/#comment-1825

  70. Rebecca Locke says:

    Like many of you, I’m a regular platelet donor and donate as often as I can. Also like many of you, in the not too distant future I will age out of my ability to be a marrow donor by the current guidelines. Last year, my dear friend received a transplant and she is doing very well thanks to a very generous donor. I would like to be one of those donors and do the same thing for someone else. But I trust the scientific determination that I may not be the finest donor in the world even though the though of that frustrates me terribly. So I’m going to be ready if the guidelines change and in the meantime, I’m going to encourage my younger friends to give blood and platelets with me, and sign up to be a bone marrow donor. Thank heaven for all of you who care so much about this that you’re upset that you can’t give. We need more people like you!

  71. Timothy Sheridan says:

    I am 52 and therefore have a few years to go on the registry. I have been on the registy for a decade and a half and have never been called. That is okay since I know that the matching is very intense. While the subject of age is the focus of this discussion two recurring themes have come through which has raised a question for me. Like many of you I have donated blood &/or platelets. Many years ago they told me they can no longer accept my blood because of the potential for mad cow disease. I was stationed in Germany for two years, 1978-1981. I was told that because we received our beef from Britian it is possible the mad cow disease is in our system with no way to test for it. I know they will not accept my blood but does this rule me out for marrow donation as well?

    • DeLana says:

      No, you are still able to be on the marrow donor list, as you can see in my comment above regarding the same issue (permanent “deferral” from blood and platelet donation due to “mad cow disease” related to having lived in Germany in 1980-82). Apparently, the “risk” of mad cow disease would be evaluated on an individual basis; I doubt any patient would refuse a life-saving donation due to the truly miniscule risk of getting mad cow disease (to put it in perspective: there have been less than 200 cases in the entire world, and this includes Britain, which has had almost all of these cases!)

      For confirmation, just read the eligibility guidelines on this site.

  72. Debbie says:

    As the family genealogist and as a professional with over 11 years of college and degrees, I hope you will look at each case individually. I will soon be 59 and have been in the registry for many years willing to donate at any time. MANY of my ancestors lived to be almost 100 years old. If you call me tomorrow, I will willingly give. No major diseases run in my family. I only have to worry about retirement funds for longevity. 😉 Please judge on a case by case basis. Bless you.

  73. Terri says:

    Jeez, I didn’t have time to read all the responses, but they all sound the same. I’m 53 and I will be very sad to be let go on the registry due to my age. It reminds me of Logan’s Run! As far as I’m concerned, no science by man is always correct. No one will ever know how a bone marrow recipient will respond to a donor. There will always be exceptions to the rule. Never say never. Take the youngest first if you will, but when that doesn’t work, I’ll be here ready to go. Why can’t the recipient make the choice? I thought I lived in America….hmm

  74. Elaine says:

    I’ve read most of the responses here, and I think that the door should be left open for older donors but ONLY if a younger one cannot be found as a perfect match. That older donor may be someone’s last and only chance for survival.
    All Baby Boomer health ego considerations aside, an independent study should be done about the viability of older marrow donors. The results would be interesting, and possibly open the door to more donors to save more lives, which is the point of all of this.

  75. Bill Admirand says:

    As I read over the posts, perhaps we old goats don’t like being put out to pasture and still want to feel useful, so we question the cutoff date……or perhaps we are the sons and daughters of ‘The Greatest Generation’ and we know no way other than the service we experienced from our Mothers and Fathers. Bottom line, I think we can all agree that generally speaking a younger donor would be preferable. What concerns us is the seeming all-knowing rigidity put forth by the experts. We just want those in need to know that we are here for them as a last, best, hope.

  76. Deb Kemper says:

    The upper age limitation will change for some of us, and I’m confident it will happen before I reach 61. Isagenix is now the world leader in supporting the health of telomeres, thanks to the collaboration of Dr. William Andrews and Dr. John Anderson. My family & I have been on an Isagenix nutrition program for going on three years; the goal is to live a longer, healthier life through whole-body nutritional cleansing, cellular replenishing & youthful aging. This is the ultimate transformation system to combat the toxins in our environment, improve body composition and slow the aging process. I assure you, my telomeres will be viable and valuable for decades to come.

  77. AnneMarie says:

    I am an intensive care unit doctor and I have treated many patients with who are awaiting or have received a BMT when they are facing the “certain death” situation that many of you are discussing. I have read all the above posts and wanted to share my observations from the perspective of a doctor to comment on some of the questions raised above. Please note I am not trained in intensive care, not hematology/oncology, and am NOT affiliated with or speaking on behalf of the NMDP. Everything below is my own opinion/impression from my time in practice.

    1) “I am a really healthy – I eat well, don’t smoke, and exercise regularly. Even though I am 62, I am much healthier than a lot of young people and my actual age doesn’t reflect that.”

    For many diseases, the fact that you maintain a healthy lifestyle will matter much more than your age. This is certainly true with things like high blood pressure, diabetes, and heart attacks. However, I have met many patients who are very healthy, fit 60+ people who suddenly come down with bone marrow diseases, while this does not seem to happen to even very unhealthy 20 year olds. So having been healthy does NOT seem to protect from bone marrow diseases the way it does from other things. And since the goal is to give the recipient the healthiest bone marrow (not overall good health), age seems an important predictor for this particular organ. I agree that perhaps in the future better ones will be developed, but to my knowledge they do not exist right now.

    2. “Isn’t getting a transplant with an older person’s marrow better than dying while waiting? Shouldn’t the patient be allowed to decide about that?”

    The problem with this thinking is that everyone recognizes the benefits of going ahead with such a transplant – the prospect of prolonged life for the recipient – but in general people do not think about the harms. My experience has been that if I offer a highly risky, painful, expensive treatment that has a very small chance of working (which some hematologists may feel describes a BMT with a 61+ donor) to a patient or family facing otherwise “certain death,” most will take it even though if they had heard about it as a hypothetical scenario, many would have opted against it. Who can blame them? They are up against the wall and they are frightened, distraught, and frustrated. We would all feel the same way if we or a loved one were dying and there was nothing we could do about it. But the problem in this situation is that many patients and families in this situation are NOT objective about their choices, and out of desperation many make decisions they would not otherwise make. The majority will accept the treatment only to have it fail, and their loved one will die anyway. Many people would say that if it extends life even a little, it is worth it, but much of the extended life in the ICU is with the patient unconscious or in pain and while the family suffers through the sadness of realizing the treatment is not going to work. This is not even considering the limited resources (time and money) used pursuing the failed transplant, and all the other ways they could have been used instead.

    All doctors pledge to “first, do no harm.” As such, part of our job is to first make judgments about whether a potential treatment is going to hurt more than it is going to help before we ever present it to you for consideration. We are able to take into account all of the harms I described above when making this assessment, which is something most patients and families cannot do because they have not yet been through this. It is not uncommon that we judge that a possible therapy will hurt more than it will help, and we do not even offer it to you. For example, I am sure you have all heard of surgeons saying a tumor is inoperable – it is not that they could not open the person up and take out what they can, it is that they judge that the harm is too great relative to the benefit, and they SHOULD not do it. Or when cancer patients are told they are not “candidates” for chemo – it is not that the oncologist could not put in an IV and infuse something, it is that they feel they should not because it will hurt more than it will help. I am not familiar with the specifics of BMT from older donors, but it sounds to me as though the people who are experts in this area have judged that based on what is presently known, these transplants present too much risk for not enough reward. I suspect this is because they have considered not only the possibility prolonging life as discussed above, but all the increased burden of illness – physical, emotional, and financial – that would come from undertaking riskier procedures.

    Remember that the doctors who are treating patients waiting for a transplant are people who have formed meaningful personal connections with their patients. They want to find a life-saving BMT donor so their patients can survive. I’m sure they don’t WANT to reject 61 year old bone marrow knowing that there is no other match and that by rejecting it, they are accepting that a patient they are invested in is going to die. So the fact that they do it anyway suggests to me that they really do believe that giving their patient that 61 year old marrow will hurt enough that it is worse than dying without it. These doctors have invested their lives in helping these patients, why can we not just trust them when they say they are doing what they think is best instead of second-guessing everything?

  78. Diane Turscak says:

    I’ve had two children, am 59, and donated platelets yesterday. Watched a movie, got snacks and a really cool t-shirt. What more could you want! Best form of recycling out there! Read the book Messenger by Jenny Stefanak, and see why platlets are so important!

  79. John Tobin says:

    Many thanks AnneMarie, your insights are a huge help. Many thanks also to everyone who has mentioned platelet donation. Anyone who has joined the NMDP registry has demonstrated a commitment to helping cancer patients -patients who need a stem cell or marrow donor. Just being on the registry is a major step and a real help to those who need it. Donating platelets is another way of helping cancer patients -chemo interferes with platelet production so if you donate platelets you are probably helping cancer patients. If you’re interested in learning about the requirements for being a platelet donor you can visit the American Red Cross site and check out the requirements for blood donors. I donated for several years, gave five gallons but was eventually barred from donating because my platelet counts were too low. I’m very glad I had a chance to do it for awhile. Platelet donation is also a great way to find out what it’s like to be a stem cell donor -of course stem cell donation takes more time.

  80. Gloria Morgan says:

    I donate “double red” every time I can. When my iron is a bit low, at least I can still donate blood. It is the least I can do for my fellow man…I will be removed from the marrow list at the end of the month, and altho I was never called on, I am glad I was there just in case.

  81. Emily says:

    As you may have read in the article, one of the reasons older people cannot donate is because the telomeres on their DNA have become much shorter than those of younger individuals. Every time a cell replicates, the ends of it’s DNA become shorter. However, there are parts on the DNA that do not code for genes called telomeres to prevent this. These are the parts that get cut off instead of the DNA. As you can imagine, once the telomeres become too short, they start cutting off the actually DNA. Obviously this is bad. Since older people have shorter telomeres, their cells will begin to deteriorate before a young person, no matter how healthy they currently are. If you put those cells in a younger person, those cells will continue to replicate, and their DNA will shrink as if they were old. This will cause major problems. So it is not arbitrary to put cells into a person that will be able to last their lifetime.

  82. Kathryn says:

    I want to thank Dr.Confer for his explanation. I also thank AnneMarie as well. I’m almost 57, so I understand my days as a donor are numbered ( 1141 to be eact). I was contacted in March about being chosen as a “possible” donor. You can’t imagine how excited I was, but I was never re-contacted after the first interview. This is one reason that I appreciate the doctors’ explanation so much. I think I will look into platelet donation, although I was told once that I couldn’t because I didn’t weigh enough. Hopefully I can try again and do that. If nothing else, I want to order a shirt and hopefully stimulate some thinking on the part of other, younger, possible donor candidates.

  83. Julie says:

    Can someone tell me why the donor can not be younger than 18?

  84. Katie says:

    This is from the original article – An individual must be 18 to donate because donation is a medical procedure (for PBSC donation) or a surgical procedure (for marrow donation) and the person undergoing the procedure must legally be able to give informed consent. A guardian or parent cannot sign a release or give consent for someone under age 18, because unrelated marrow donation is a voluntary procedure and is not directly beneficial or life-saving to the volunteer donor.

  85. admin says:

    A response from Dr. Confer:
    The National Marrow Donor Program exists to give patients the best possible chance to receive a transplant and live a longer life. That’s what motivates people to join the registry in the first place, and it’s the reason so many people are passionate about not being denied the opportunity to help.

    Questions about age guidelines for donation touch on many complex issues. There are no simple answers that will satisfy everyone.

    To continue to help patients, we must maintain the bond of trust between donors and the National Marrow Donor Program. Our age guidelines help preserve that trust, by protecting donor safety and ensuring that all donors are treated fairly and equally. That means that no one is subjected to unfair risks, expectations, or coercion.

    For example, say I contact a donor who is 62 years old and say, “Look donor, I wouldn’t normally contact you because you exceed our recommended age guidelines, but you appear to be the only person in the world who could match this 8-year-old child.” On the surface, that sounds exciting, but there are serious ethical issues involved.

    I have not only made an exception for this particular donor, but I have coerced them in the process by adding pressure to donate. And once I begin making exceptions, it is a slippery slope. What about a donor with high blood pressure or a minor cardiac problem? After all, we have a child depending on this donor …

    There is also an issue of informed consent. Some have argued that if a donor over age 61 consents to accept the risk, they should be allowed to proceed. But this isn’t really true. As a physician, I have a duty to protect my patients. If my patient is a donor who consents and something goes wrong, I will be held responsible by the donor (if alive), their family and my peers. I would be responsible for having failed to explain the true risk, or for allowing the donor to make a poor decision. It would be clear that I had failed in my role as a physician, and the NMDP had failed as an organization for not protecting its donors. This failure would not only be dangerous to donors, it would destroy the public’s trust in the National Marrow Donor Program, and damage our ability to help patients.

    I appreciate the passion and dedication of all the registry members who have expressed frustration at being excluded by our age guidelines. I encourage them to redirect their frustration into action that can make a real difference for patients: by telling others about their commitment to the program, by encouraging family and friends to join the registry, by making a financial contribution to help others join, or by volunteering at a recruitment drive.

    I remind these members that even if they were not called as a match during their time on the registry, the next person they help recruit could be. What helps the most is working together, each of us doing what we can to help patients get the transplants they need.

    • Pam says:

      I am very happy I found this. I was so upset when I saw a drive locally and they stated the age requirements were 18-44 I was thinking man I am out of range. I was a successful donor for my oldest sibling and I can honestly say that after reading this post I can agree with age limits. I remember how I felt during and after the process, don’t get me wrong the pain was very bearable but it was real pain. I would do it again tomorrow to save someone’s life. I am now 46 and I still vividly remember the bone pain I had experienced and thinking about an elderly person in that type of pain could cause other issues. Please don’t allow me to scare anyone who is considering the process, like I said it was real but I can not begin to tell you the joy from the words of successful transplant and then 1 year later her being Cancer free and that my marrow had taken over. The transplant was in 2006 so we are now 10 years cancer free. I can’t tell you how wonderful it feels to save a life especially my oldest sisters life. Praying many others sign on to this very worthy cause.

  86. Shoshana says:

    Thank you for this clear explanation. Although I’m still sad to be moving to inactive status in another seven months, understanding the reasons makes me feel better. Certainly the people needing marrow deserve the best marrow possible. I’m glad that I can still give platelets.

    Now it’ll become my job to find a younger person to sign up to replace me on the registry, and I encourage everyone else of my age to do the same.

  87. Andrea says:

    I was lucky enough to be a donor at age 56. I was not a perfect match, and my recipient went to hell and back. Five years later, I believe she is still having medical problems. I was fortunate enough to meet her about a year and a half ago, and, despite the fact that she had three beautiful daughters, a husband, and a loving family, she very frankly said that if she had known ahead of time how much hell she had to go through she might have refused the donation. My recipient is a doctor herself by the way.

    I met my recipient 3 years after the donation and she was still having good days and bad days. I learned that she is still being hospitalized frequently.

    I feel bad about my registration expiring because I would love to help again – but I accept that it is the best thing for the recipient. Now that I know my age may have been another factor contributing to her rocky recovery – I feel even sadder. I would not wish on anyone what my recipient went through. Sometimes something is NOT better than nothing – that’s why we have living wills.

  88. Suzan Greeson says:

    Thanks for your comprehensive explanation regarding the age limit. I like many others felt sad and cheated when I aged out of the program (I’m 68)and no longer had the potential to be able to help someone, but I certainly have a better understanding. The last thing I would want to do is disadvantage a potential recipient. What I can continue to do is be an potential organ donor and continue to be a blood (I’m working on my tenth gallon) and platelet donor and encourage younger people to sign up for the Bone Marrow Donor Program.

  89. lesley says:

    I am 60. A very good friend of mine is seriously ill in hospital. She is awaiting a bone marrow donor. Why cant I be considered as a donor? I did read the article pointing younger bone marrow is better, but if am a match,(long shot I know), but at least she would have a chance if no other match is available.

  90. Freckles says:

    Wow! I am appalled at some of the messages left here. How selfish can you be? So many of you are disappointed because you were not able to donate and your time is up. Boohoo. This is not about you! Shame on you for complaining that you don’t get to give. Your volunteering is appreciating but we would hope you did not do this just so you can brag about saving a life or whatever petty reasons you have for some of these comments. Sheesh!!

  91. Kelly Buechler says:

    I am confused. The deletebloodcancer website says the upper age limit for donating is 55, but the top of this page says it’s 60. So which is it? I am just barely (in the last week) 60. While I may not be eligible now, despite how close it is, I know others who are below 60 but over 55 that would like to register. Please clarify.

  92. Pooja S says:

    Can bone marrow checked twice that too after early 70s
    Please advice. I am confused is it harmful.

  93. Jayma says:

    Why can’t bone marrow be harvested and then preserved – frozen, or by some appropriate method, for use when needed? Freezing has been shown to be the preservation of choice for many other things.

    • John D says:

      Found this page and asking the same question. Is it expensive to maintain, in the long run? I suppose person stem cell banking ( eg cord blood) is done for those who can afford it.

      I’m from South Africa. The upper age limit here is 45 (Sunflower Fund organisation)

  94. Lyndsie says:

    I get the age limit for after 60 but what if someone is 17? I would like to donate marrow but i don’t understand why being a year off from 18 makes a difference.

  95. Danielle Tripp says:

    Would someone with NF1 be allowed to donate?

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