Be The Match Focuses on Building a Younger Registry

Posted September 26th, 2012 by Be The Match and filed in Donor Stories
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On October 1st, Be The Match® became a lot more intentional about building a younger registry.  Recruitment efforts are now focused on individuals ages 18 – 44. Why? Because transplant doctors request donors in this age range more than 90 percent of the time. “Multiple studies examining the impact of donor age on transplant success show that younger donors result in better outcomes for patients,” said Willis Navarro, M.D., medical director of transplant medical services for Be The Match, operated by the National Marrow Donor Program®.

While Be The Match focuses attention on recruiting individuals ages 18 – 44, patients waiting for a life-saving transplant need support from people of all ages on the registry. “Every committed registry member is valuable because each one may be a match for a patient. For this reason, we are keeping the registry open through age 61,” said Dr. Navarro. “The change we’re making is focused on recruitment practices, so we grow our registry with members most likely to be called to donate.”

Among those efforts is strengthening recruitment on college campuses. In 2010, Lexy, a college sophomore, joined the registry at a Yale University drive. Two months later she was called to donate for a 64-year-old man diagnosed with acute myeloid leukemia. “I donated three days before Christmas, and it was the best gift I’ve ever given – the gift of life,” said Lexy. “Now I am very involved with organizing drives on campus each year. After four years of drives, we’ve added more than 3,000 people to the registry with over 14 matches to date.”

According to Dr. Navarro, there are many ways to help save lives. “It costs about $100 to add a new member to the registry, and Be The Match relies on financial contributions to help cover these costs,” he said. “Volunteering and spreading the word about the need for younger donors are also life-saving contributions.”

People ages 18 – 44 may join the registry at a local registry drive or online at no cost to them, but they will be asked to make a voluntary financial contribution. Those ages 45 – 60 who are interested in joining the registry are welcome to do so online at BeTheMatch.org/join with a $100 tax-deductible payment. All potential donors must meet age and health guidelines, and be willing to donate to any patient in need. Each registrant completes a health history form and provides a swab of cheek cells.

“Thousands of people are looking for a match,” said Lexy. “I joined the registry and when I received the call from Be The Match saying I was a match, it was the most amazing feeling. Now I tell other students that they, too, could be the cure.”

164 Responses to “Be The Match Focuses on Building a Younger Registry”

  1. Tracey Martinez says:

    I think it ridiculous to charge a fee for anyone. Whether a person over 44 will be called or not there should be no cost, tax deductible or not, for people considering helping others this way. You are effectively stating that donors over 44 are not desired and taking money for no one’s benefit but your own pocketbooks. You’ve just disenfranchised a large group. I will remain on the registry because I believe in being out there ”just in case’ but will not encourage anyone to join your group; I refuse to support any group that so discriminates. If you do not want donors over 44, just stop taking them at all.

    • Andrew Sprow says:

      I am not an employee or beneficiary of Be The Match or the NMDP, but I have donated PBSC through the program to someone, and am very happy I did. I joined free of charge via a membership drive when I was 18 years old. It has never been free to join this program. Please don’t look at this as all of a sudden we’re going to charge older individuals and not younger. The truth is simply that the fee is now being waived for younger individuals. This is not discrimination, this is using their funds in the most effective way they can, to help the largest number of people. I support this decision, and look at it from a completely different viewpoint, where I was thrilled to hear that there is no longer a fee involved for this core group of donors.

      • PL says:

        Rephrasing it isn’t fooling anyone

        You’re still charging people over 44

        Some might have been the only match, regardless of what a doctor’s preference might be

        Are the doctors really saying that if the person over 44 is the only match they don’t want the marrow? I don’t think so!

      • RunRoyRun com says:

        Instead of discouraging people from joining the registry, how about educating doctors that marrow is marrow.

        If I were in need of a transplant, and I knew my doctor was delaying my donation because potential donors were “too old” I would find another doctor!

        If I had a family member who died because the doctor prevented potential donors from saving the life of the patient, I would see them in court!

        The registry should suppress, or remove, the age of the donor. The only focus should be for finding a match! Not a date!

        This is yet another example of doctors that have a god complex.

    • Joe Smith says:

      Tracy I understand your points but I am curious who you propose pay for the testing and work to put people on the registry. From everything I’ve read the marrow registry is non-profit and trying hard to raise funds to keep teh registry growing. I hate when people don’t offer solutions but tell organizations that they are doing it wrong. This is a tough time to be a nonprofit and I hope that National Bone Marrow Reigtry is making decisions based on making the most of their money.

      • Tracey Martinez says:

        Every non-profit incurs costs. In the example I cited, the Red Cross does not charge donors. The Registry should either increase fundraising, set better priorities with the funds already in hand or charge everyone. Do not state that anyone over 44 must pay and those under will not. The goal is to increase the pool of younger donors and that is fine. Once they increase that pool to cover the 10% of us that are ‘undesirable’,they can actually drop everyone over 44 and be done with it.

        • Michelle says:

          The registry has always asked for the $100 donation from EVERYONE. Unfortunately, not enough people give when they asked for donations,(I used to work for a non-profit) so now they have to use what money they do have in the most responsible way, which means spending the money they have on donors that are MORE likely to be asked to donate and give patients a better chance at survival AND are going to be on the registry for a longer period of time. Be The Match does a lot of fundraising, they even started a national walk called BE THE OE RUN to help pay for these costs, but again, not enough give.

          And to your point about the Red Cross not charging, that’s because the hospitals pay Red Cross for the blood they collect, it’s free to you, but not to the hospitals, patient’s/patient’s insurance. When Be The Match facilitates a donor for a patient they do not get paid that $100 from the hospital. Be The Match is not in the business of making money, they are a non-profit, they rely on DONATIONS, if people don’t donate they don’t have the money to do what they do. It’s really that simple. It’s really not personal.

    • Denita says:

      If and when I am called upon to pay anything, I shall delete my name. It is over-whelming that such an organization age discriminate ie. if your under 44 we will not charge you if your over 44 pay up What the heck is this ……I am ashamed to be on this list be will continue until asked to pay up or leave ….. Shame on your organization and Shame on your Board who approved of this insane idea

      • Joe says:

        Denita- you won’t be asked to pay if you are already on the registry. This is simply for new people joining the registry. Leaving the list hurst no one BUT the patients. There’s so much anger on this blog… let’s not forget that the patients did not make the decision and by saying no to the registry hurts them… more than hurting the organization.

        • Candi says:

          It hurts everyone. By charging those of us who came here wanting to help and finding out we are at the cutoff age and having to pay is disheartening. People often want to donate or be match because they cannot donate financially. This does hurt the patients, but you cannot blame those willing to help but unable to pay. It is hurting us too.

    • ken says:

      I agree.Trust me,the people doing the surgery is getting paid the hospital is getting paid….Shoot,you going to pay me to take my marrow and make money on it..no youre not…this makes me sad to hear this.. 🙁

      • Michelle says:

        No one is “making money” on your marrow. It cost’s Be The Match $100 for every person they register to do their testing (lab fees etc.) Who pays for that? They are a non-profit. They need donations! This is a tax-deductible donation they are asking for to help them keep registering donors.

    • Ali says:

      I agree, its just another way to discriminate. If 10 percent of the time it works then how many possible well intending donors are being turned away?? What about low income people who want to help? You have turned me off from your cause and I wonder how many blood and plasma and bone marrow perfect matches will not be matched because of their policies.

    • Tessie Gaa says:

      I agree with Tracy. I am a healthy 36 year old and when I went to sign up I read that people older than 44 have to pay, it completely turned me off. One should not have to pay for trying to save another life. The organization should be grateful for the donor wanting to help and are even offering their marrow. The organization should absorb these costs. I’m sure there are many government incentives that help fund these costs. Because of this unfair policy I will not be signing up and will not support this discrimination. It is so sad that the deterrence of donors could be costing a life.

  2. Brad says:

    I agree with Tracey. This is a terrible message to send. I have been registered for years, but now feel like I’m no longer welcome. I have 9 years left, and still hope I get called to donate. If I were considering joining up for the first time though, this would gice me second thoughts.

  3. Gary says:

    I could not agree more with Tracey and Brad. As 53 year old registrant who has been for several years (but was older than 44 when I started), I find this message troubling on multiple levels. If there is a scientific basis that 44 is a reasonable upper limit, then so be it and that is a shame, but face the facts and stop taking candidates older than 44. On the other hand if it has no real basis, then don’t put this discouaging message out under what appears to be doubletalk and a feeble attempt to not discourage those older than 44. As for the $100, this is the day of internet connectivity and automation. I question such statements like it costs $100 to add someone to the registry. Perhaps it costs $100 for sampling and lab work but don’t suggest the cost is something so trivial as adding data to a database that the registrant enters online in the first place.

  4. Rick says:

    I’m 47, and I understand the new policy. Nobody’s lining any pocketbooks. Here’s the Charity Navigator analysis of “Be the Match” and their use of money: http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=9042

    When I joined (back in the stone age), *everybody* had to pay to join. It costs money to get the blood and do the tests. Then, I guess, they built up enough capital to absorb the costs.

    But if I have the choice to pay $100 for something that will last 40 years, or pay $100 for something that will last 15, I’m going to go with the 40-year option. Besides that, like the article said, younger matches make better marrow donors for the patient on average.

    I hate getting old, myself. Fewer years left, and it really is a great planet, after all. I wish I could live 10,000 years. But I don’t blame “Be the Match” for a strategic decision that will help the patients and keep the registry solvent.

  5. Carla Armstrong says:

    I believe in this cause, that is the reason why joined up almost 15 years in attempt to help someone! Shortly afterwards my young cousin needed bone marrow, we discussed a ‘drive’ unfortunately, he died before he could get the transfusion, leaving a wife and two young daughters. I don’t think we should ‘donate’ $100.00 in order to joined a group that helps people. If 45% of persons on the on the list would be appalled and remove their name because this new policy, as I’m almost certain it’s going affect new persons, we will loose so many donations! Perhaps someone should have given this policy more thought!

    • Michelle says:

      As someone who has worked in non-profit and can only imagine how hard this decision was for Be The Match, it’s not responsible of you to say “perhaps they should have given this policy more thought”. My guess is they gave it a lot of thought, and not all decisions are easy to make. I’m a registered donor and I held several marrow drives at my college campus years ago. I respect be The Match and know they must be having a hard time themselves with this change in policy. And to your other point, it’s silly for people to say they’ll remove themselves, ummm you’re already paid for. Get it? Someone paid for you back when you registered. The only people who are hurt by you removing yourselves are the patients.

  6. Amy says:

    I agree with Tracey, Brad and Gary, and I think you have just risked offending a large group of both current registrants and possible future registrants. My husband and I both paid to get on your registry several years ago for a donor search for a little boy in our church. Ironically we would have “made the cut” age-wise at that time. If all you want is money from those who are 45 and older, why not just be up front about that?

  7. Tracey Martinez says:

    If it costs money to get the blood and do the tests, which I have no doubt it does, then they should levy the fee on everyone, not just the ‘undesirables’. The Red Cross does not charge for donations or to keep potential donors on the list. As we said: if they do not really want those over 44, they should be honest about it and not take them at all. This new policy sends a discouraging message that I cannot support.

    • Luca Masters says:

      “If it costs money to get the blood and do the tests, which I have no doubt it does”

      Seriously? You doubt that medical tests cost money? What world do you live in?

      THis is a prudent choice. A lot of people will get mad, apparently, but insisting they should magically cover all the costs does nothing to help anyone.

      Go tell your senator that you want government funding of a registry. The money has to come from somewhere.

      • Luca Masters says:

        Ah, no doubt. I need to learn to read. Sorry for the confusion.

        At any rate, we need to go with what helps the most people, not what makes people feel best about it.

        I want to be a part of (and donate to) a registry that puts the priority on the spending that saves the most lives. The registry has chosen to be _more efficient_ in its spending. It’s a little sad to see peple so upset about that.

  8. Jacinta Bryant says:

    I can’t believe you now want me to pay $100 to be on the register. I can’t and won’t pay. I guess I will no longer be and won’t be a memeber any longer which makes me very very sad. I have been registered for many years and have waited to help anyone in need. If I am to old then I won’t waste anymore of my time or your. Thank you.

  9. Susan says:

    I agree also. I am 46 and have been on the registry for many years now. I have always wanted to be called to donate but have never been. It breaks my heart to know that my marrow is not as desireable, and I would like to hear the scientific reasoning as to why doctors request younger donors. I wonder if anyone from Be the Match will respond to this question. I also don’t like the $100 charge for only older donor applicants. If I weren’t already in the registry, I would not do it, especially after reading that my marrow might not be able to help anyway. I will stay on the registry and hope to be called, and I will continue to donate blood platelets through the Red Cross as well.

    • Richard says:

      What they are really saying is that you’re over 44 we don’t want you marrow, but you”re $100 bucks is good. Make sure to mark the form correctly, indiccate you’Re over 44 years old so we know to throw your application and your cheekl cells away, but be sure to put the correct security code on your credit card payment. I too am on the registry, have been for many years since my son was diagnosed with cancer. I felt I might be able to help someone else out. The registration was free, cell collection was done and I haven’t heard a thing, obviously my cells don’t match any of the hundreds of thousands in need… or maybe my $100 would have moved a donation forward. Great cause, but fundraising for the paychecks of the admistrators is a crime. (Or it should be)

      • Michelle says:

        Umm registration has never been free, they’ve always asked for donations. Unfortunately people don’t donate money like they should and now tough decision have to be made. I get it. And to make a statement like “maybe my $100 would have moved a donation forward” is really irresponsible of you. If you’re registered, you’re registered. If you haven’t been called it’s because you haven’t been a match. It’s that simple.

        Oh and as someone who has worked in non-profit, they have one of the lowest wages to work hours ratio in any industry. No one works for a non-profit for the money, they do it because they take pride in helping others in need. I bet you make more money than these “administrators” you are referring to in your comment. Shame on you for perpetuating such negative commentary on an organizaiton that is really trying to help people.

    • Wendy says:

      I have a pretty good idea why younger donors are more “desirable.” As you age, your marrow loses cellularity. This means that there are less good cells in your marrow, and more empty space instead (in non-medical terms). Of course younger people are the preferred source when there are multiple matches! You have to remember, though, that there may not be multiple matches, but only one, and it may be an older person. Doctors have been searching for a match for my child for eight years, and they haven’t found one. Thankfully, his marrow hasn’t deteriorated so much that the transplant has been absolutely necessary yet. Believe me, if we found a donor who was sixty years old and a match, we’d jump at the chance!
      You never know when you may be called to save someone’s life. I have a friend who did this when she was in her late fifties. Of course you should stay on the registry. Hopefully, you will be called. Most people never are, though.
      It has always cost to join the registry. I hate this, but I understand it. I would assume that part of the thinking is that $100 is more difficult to come by for an 18-year-old than a 45-year-old (yes, that is a generalization). I am so glad that they’re able to make it free to the younger people, but I agree that less older people will probably join now, and that’s a shame. More than likely, less money will be collected overall, and they will have to go back to charging everyone, and they’ve alienated a group of people. I wish I knew an answer that would solve the problem for them.

  10. Tom says:

    The fee is insulting. Be The Match should simply focus on drawing younger donors or lowering the upper age limit. I joined the list after age 45 and 3 years ago was called to donate PBSCs, which I gladly did. I would not have joined if a payment was required, and perhaps my recipient would have had a less compatible donor. Because of this news of the fee, I will phone Be The Match this week, and no later, to have my name removed from the list.

    • Michelle says:

      Why would you remove your name from the list if you’re already registered? No one’s asking YOU to pay, you’ve already been paid for. In doing so what you’re saying is in protest of this new policy (btw it’s a tax-deductibe donation, not a fee) I refuse to make myself available to save another life. Shameful.

  11. Peggy says:

    As a nonprofit professional, I can tell you that you have just killed any amount of goodwill that you built over the years. When I registered for this organization, it was because your organization needed more minority registrants. If you used your present tactic, you would have charged all non-minorities a 100.00 and basically stated you can join but pay 100.00. All you needed to do was ask the current registrants for a donation to cover the cost of testing new registrant. Then go to colleges to boost the number of younger registrants. Did it ever occur to you that we “old” people know where the college students are? It is because we are paying their tuition bills. I could simply ask my daughter and her friends to register. Good luck with your current plan.

    • Trina says:

      In past years, I have seen bone marrow drives that were free to minorities, while they charged for non-minorities. I’m glad I was already on the registry and never had to pay, because I wouldn’t.

  12. Max says:

    I used to get excited when I received an e-mail from Be the Match. I thought this might be a first attempt to contact me about being a match. I am disappointed in these changes. I have been a registrant for 20 years. I joined when my daughter had leukemia. I will be 54 in two months; I guess I only have another 6/7 years on the list. I understand as people get older there are health issues which may impact their ability to donate, but how close is the match? Is there nothing that can be done to help people with health issues to donate if they are a match? As for the $100 registry fee it makes me very sad. Many like myself have spent a lot of time in fund raisers for Be the Match and other charities not to mention our willingness to donate bone marrow.

    • Karen says:

      Yes why does Be The Match keep sending me emails to reaffirm my commitment to donate if I’m over the limit? I paid the suggested donation when I signed up, it was under $20. You have really offended a big chunk of your supporters.

      • Trina says:

        They’re making sure your contact information is still correct. They send stuff in the mail so that, if you’ve moved, they’ll get your updated address from the post office.

  13. Kris says:

    I joined so long ago, I don’t even remember a fee. I’ve never been called. I am discouraged to learn that at age 59 my body is so worthless, I can’t even donate bone marrow.

    • Trina says:

      I’m 55 now, and have been on the registry for probably over 20 years. I gave blood for testing and was once called back for further testing, but I wasn’t a close enough match. So now I won’t get called unless I am a closer match to a patient. What disturbs me in not being called to donate is this: Does this mean if I ever needed a transplant, am I that unique that I would have difficulty finding a match for myself?

      • Danny says:

        You will STILL get called in if you’re a likely option for the initial 6 HLA match with a patient, to do further testing on 10 HLA antigens. No it doesn’t mean the converse. You can be possibly matched with someone on the registry. You’re just thinking that because no PATIENTS with the disease match you close enough. Doctors always want the best match as possible.

  14. Hank says:

    Shame on all of you. Frankly I never expected to see such selfishness and lack of compassion on a charity website. This isn’t about you, people. This is about the opportunity to help a desparate family save a loved one, someone’s father, or mother, or child.

    The reality is that this is a smaller charity that doesn’t have the fundraising of a Red Cross or United Way. I suspect many of the folks that joined do so because a relative, friend or colleague got sick mad they were asked to get tested to help. This cause probably relies more on word of mouth because let’s face it, if you are called there is a slightly bigger sacrifice than just writing a check.

    That is how I joined. And I willingly paid the fee. It sounds like they are trying to focus efforts on recruiting kids who may not have the financial means to pay the lab fees and other costs. It also sounds like they would rather spend their limited resources on recruiting vs. fundraising, which I applaud.

    You know, it would be a real shame if someone died because one of you pulled your name off of a list that you felt compelled enough to be on in the first place, especially if it is because you were too self-absorbed to let go of your foolish pride and look at this from their point of view.

    • Shadlyn Wolfe says:

      ^This!

      Shame on all of you. They aren’t saying you can’t be a donor, but they are trying to use the donation money to bring in the people most helpful.

      Because it’s not JUST about being a match and being called, people. If you’re called, there’s going to be a physical and they’re going to have to find out if you will be okay if they do the procedure.

      And LIKE IT OR NOT, as you get older your health declines. If you’re REALLY LUCKY you started out ahead of the game, and you can still run circles around those 18-year-old kiddos, but most of us decline a little each year.

      Then there’s the time differential. Getting you registered is a one-time cost. The average 18-20 year old could be on the list for 40 years. If you’re 50? They’ve got about 10. You’re not a good investment FOR THE PATIENTS.

      So stop whining about how HURT you are and ask yourself…if you were going to die without help, how would YOU prefer they spend the money looking for your savior? Best chance? Or the one that doesn’t hurt someone’s feelings.

      I know how I’d feel, and if you’re not a liar you do, too.

      • Ken says:

        ^ thank you!

        I’m ashamed of some of you. Volunteering for the registary is supposed to be a selfless act. You know, charity? Instead some people just want to be told how special they and their protein markers are.

        Sorry to those offended, but matching is scientific. As you age, both your overall health AND the relative health and functionality of your cells decline. DNA errors crop up. Cell division slows. It doesn’t mean that if you are 50 your marrow is worthless. It does mean if you and a 20 year old match equally the doctor will prefer the younger. If you are the only one who matches then the doc will happily take your donation.

        With limited resources it makes scientific sense to attempt to maximize your best pool of donors. Like someone else said, it’s about the patient’s life, not our emotions.

        I’m 30. I didn’t have to pay. I donated 100 anyway. Get more people to do this and the problem goes away.

        • Danny says:

          Exactly. I was waived ($65 I think) because I’m a minority but I still would’ve given since I have the money. People are thinking about money and it’s embarrassing.

    • Pam says:

      I am 53 yrs old, and a past T-Cell donor (at age 45) and never paid a fee. I get a warm fuzzy when I think about the life of the 34-yr old leukemia patient that I saved. However, I have since removed my name from the potential donor list in protest and will now encourage friends and family to do the same.

      All non-profits can apply for grants from the Federal or State Gov’t. I used to work for a non-profit and it takes a little effort and some good writing skills, but why do that when you can suck the money out of the older folks, who seem to always take it on the chin these days for everything.

      If you think the marrow of a 45 or 55 yr old is not viable, then don’t bother recruiting older people to register and put your efforts into the recruitment of younger people. Oh, but then you wouldn’t have enough money! If funding is that short, maybe you should charge everyone and avoid age discrimination complaints. That would be the fair thing to do. Good luck with you efforts. It doesn’t sound like your new plan is going over with a lot of people. Especially the older ones with ‘undesireable’ marrow.

      On a final note, it’s sad that you are shooting yourself in the foot by alienating a large population of donors whom I’m sure you would call if they were a 1 in a million chance of saving a life.

  15. Rose says:

    I think you’ve made a hash out of your effort to recruit younger donors. Scientifically, it makes sense that younger cells are more successful at transplant. Sociologically, you have told a core group of your supporters, people who are already self-selected to be generous and giving, that we are not valuable and are actually a burden on your system. Some may be angry, but almost all of us are going to be sad and disillusioned. How exactly does this help your core mission or your recruitment efforts? You could have handled this in so many other ways that could have made us feel appreciated (call on our expertise to help recruit), or like we are still contributing even when it is so unlikely we will be useful in a transplant (ask us to sponsor the cost of testing a young replacement when we age out). People like us have told you we’re willing to put our lives on hold at any moment and respond to need. Couldn’t you have found some way to schedule us to run drives at college campuses? Give us an e-mail to forward to all our younger friends (we do have them)? Be the local color in news stories for a big recruitment push you’ve set up? We’re intelligent, articulate and informed. We could do you a lot of good; now we’re not sure we want to bother.

  16. Hank says:

    And by the way, their position is about simple statistics. If a 46 year old like me has 15 potential years to be a donor but an 18 year old has 45 years to be a potential donor, and you only have the financial resources to sign up one person, you’d be an idiot to sign up the 46 year old. It doesn’t take a rocket scientist to realize that.

  17. Billy Fain says:

    I was a donor in the past and I can tell you that there isn’t anything more rewarding in life than saving someone else’s. There has always been a fee to get on the registry. You may not have paid it when you signed up, but someone did. Whether it was through corporate or personal donations, someone paid them. Those individuals that have been placed into the 45 to 60 age group since getting place on the registry do not have to pay $100.00 to stay on. Once they are on, they will always be on. To take your name off the registry is crazy if you would still be willing to donate. This is a great opportunity to increase the numbers of the most qualified donors. Evidently, there are more request for 18 to 44 year olds than any other so why not focus on them. This is about saving lives…saving lives…saving lives!!!
    If you really want to help, host a drive now while there is no fee for 18 to 44 year olds and ask your company to pick up the cost for those 45 to 60. Therefore, there would once again be no cost to anyone. Just like it has been in the past!!!! Just like it was when you probably signed up. This organization has saved lives…remember that!!!

  18. Columbine says:

    I joined for free back in the day, but it was at my place of employment, so I guess my employer covered the cost and just didn’t say so.

  19. Karen says:

    Someone should be fired for this public relations disaster! As a member for 8 years and now age 47, I was shocked at this callous email. Here is how it should have read:

    “As a faithful member of Be The Match registry, we wanted to thank you and express our deepest appreciation for your steadfast commitment. Our doctors have recently confirmed that marrow from donors ages 18-44 has the best chance of a successful marrow donation and is requested by doctors 90% of the time. We are now accepting new donor sign-ups in this age range only. We wanted to assure you that those donors over age 44 who are already on the registry will remain on the list as there is still a chance that they may be called to donate marrow. Your support and unfailing dedication is absolutely vital to our cause. You are the bedrock of our foundation and without your commitment to be a donor and your help in fundraising, mentoring, social media capmpaigns and organizing donor drives, we would not be able to help match donors and save lives.”

    You will notice there is no mention of a $100 fee! Just stop taking donors over age 44 from this point. If you’re that worried about $, when a potential donor puts in their age online the message above could appear with a donation box stating that all amounts are deeply appreciated and help fund the cause.

  20. Anita says:

    You cannot be serious about charging based on age. Two words: age discrimination.

    • Danny says:

      You’re not thinking the whole picture. If a drive was set up at a college, you’d think students would donate if they had to pay $100. You’d think a 30 year old would? The fact that so many people are talking about money in this post is astounding. I would pay $100 without a doubt. If I didn’t have the money, I’d make sure to save up so I can spare that $100 one day.

  21. Ellen says:

    I agree with the other posters that it’s age discrimination to charge people over 44 money for possibly being able to save somebody’s life. With the attention from Robin Roberts, efforts should’ve been made to raise enough donor money or hold enough charity fundraising galas or something to make the age discrimination unnecessary. If organ donors over 44 or their surviving families were asked to donate money for the testing etc., the media would raise high holy you-know-what about it, justifiably!

    • Karen says:

      By the way, Robin Roberts received a marrow donation from her older sister Sally Ann Roberts, who is a lot older than 44!

      • Lavonne says:

        I really wonder what Robin would say about this. Not that I what her to know, she does not need this stress in her life. It is really disappointing to hear we are only needed now as a number.

      • Danny says:

        Because she got a match in the family, which only happens 30% of the time. It’s not about the age for Robin Roberts. Don’t jump on facts when you don’t know the science.

  22. Robert says:

    Geez, ever hear of altruism? Agree with Hank. All I read is “they’ve insulted ME. Why is MY blood not good enough. How dare they charge ME just because I’m over 44.” ME, ME ME. There’s no I in Cancer!!

    Ever think that maybe they’re changing the focus because they DON’T have enough money to sign up everyone. You talk about fundraising efforts, well it takes money to raise money. Look at the expense ratios of other charities.

    Instead of griping, why not organize a fundraiser and maybe they’ll have enough money to change the policy!

    • Tracey Martinez says:

      It’s not about being insulted. It’s a matter of their disenfranchsing a whole segment of the population. If they don’t want folks over 44, they should just lower the age, not say ‘you can be here, but we won’t use you (I’m sure that likelyhood goes way up with age) but you can pay use to join.

      • Danny says:

        Yes it is about being insulted because that’s what I’m reading all over the place. That or thinking you’re worthless. What the PR didn’t realize is that people misunderstood the message because the general public doesn’t know the science of BMTs.

  23. Jean says:

    I believe that everyone who has replied has a caring heart–that is why you signed up on the registry in the first place. But, as stated on the site, and several times (thanks Joe and Robert, and others)–the cells/marrow of YOUNGER donors is being requested for transplant over that of older donors. As a RN, I know that this is not an age discrimination thing at all, but based on OUTCOMES and medical EVIDENCE.

    PLEASE don’t be offended. Money is needed because this cause has costs. OUTCOMES show younger donors produce better results.
    When my son had his SC transplant he got to use his own cells. But if those of others were needed, and 2 matching donors were found, one 19 and one 60 years old, I am sure the 19 year old would be selected.
    Think of it this way-if you needed a heart and 2 were available but for whatever reason (?age), medical evidence showed that the one from the 60 year old was not as likely to be as successful as the one from the 19 year old donor, which would you want? Think about the patient…
    Thanks–48 yr old mom/nurse (I’ve been on register for 20 years)

  24. stephanie says:

    My husband died 5 years ago because he didn’t find a match in time. To be honest, I had never heard of the registry until he was diagnosed with leukemia. It was Be the Match that explained to our family and friends that the registry needed grow to ensure that donors would be there for us and for others in need. It is a message I heard loud and clear!
    This is not about me or you feeling like we don’t want you because you are over 45 , it is about my husband the other 10,000 patients a years in search for a donor. It is about Joe wondering if he would be here to see his two beautiful daughters graduate from high school, go to college, get married, have kids, etc…it is about my daughters who had to say goodbye to their dad at the ages of 15 and 16 and not have him there to walk them down the aisle or take care of us like he had done so proudly for 20 years.
    The transplant doctors make the decision as to who is the best candidate to donate. I’m not offended one bit that I am 52 and if they had the choice between me and a younger donor they’d would go with them. This is the last hope for these patients, so everything has to be done to ensure the best outcome.
    The fee shouldn’t be looked at as a “fee”; you should look at it as a way of making a contribution to a cause. I’m sure you get emails everyday asking you to make a donation to one cause of the other. Are you offended when someone else asks you for a contribution?
    The difference is this program is more like an insurance policy. YOU the donors are the insurance and when it’s needed, you NEED to step up! The bone marrow registry is very different than most non-profits. We cannot survive without YOU! …the money Be the Match raises is to add new donors to the registry. They could add another million people to the registry with no guarantee that a single one of them will be called.
    The recruitment staff at be the Match works 7 days a week to help every family in need and through community outreach spread a message of hope and a commitment that you may be called in the future to save a life. This blessing and gift will change your life forever. If you had a family member in need, you would understand this.

    • Jami B. says:

      I couldn’t agree more with Stephanie and I would like to jump in and offer the voice of a younger registry member. I’m 23 years old and decided to join the registry last year and was called to donate 4 months later to an older man suffering from cancer. When I registered I did not have to pay because of my age — which was a blessing since I was just graduating college and unable to land a full-time job and I barely had enough money to make it paycheck to paycheck. Fact is a lot of my generation is going through some tough times – financially (not to say that everyone else isn’t either — I’m just speaking from experience from what I see from many of my peers around me). I for one appreciate Be The Match for encouraging us to join their registry and for making that easier for us to do so.

      For me I joined the registry because I wanted to help. I told myself if it was my mother, grandfather, whatever I would pray that someone would step up and be willing to help in order to save someone so important to me. I’d pay anything to save them. So yeah, some age groups are being asked to pay a fee to join the registry …. a fee that once paid will never need renewed and can be deducted from your taxes. To me, this age group is more likely to be financially stable (again I realize that this isn’t true in all situations) and may be more able to cover the expenses that add up with testing and going through the long process of adding someone to the registry.

      Reading all of your comments I find myself upset, but I realize I can’t really say how I would feel if I were on the other side… perhaps maybe the answer is the registry should require everyone to make a donation to be added — but let the individual decide how much they are able to donate?

      But when it all comes down to it Be The Match is doing a wonderful thing… they are saving people’s lives… and until you have a loved one in need a donor I don’t think you can even realize how insignificant a $100 sounds (especially compared to all medical expenses for cancer patients) and when it comes down to it… IT’S SOMEONE’S LIFE. Let’s get as many people as we can on the list (even if that means that some will no longer have to donate the “fee”).

      Donating is a remarkable experience — one that I would never give up or take back. And even though I didn’t have to pay to have my cells tested and added to the list — I have made donations since because I truly believe in this program.

    • admin says:

      Hi Stephanie, we are very sorry to hear about the loss of your husband. Thank you for sharing your story with us. We appreciate your continued support of the Be The Match mission.

  25. Holly says:

    I agree with the many others so far that feel it is OUTRAGEOUS that they want to charge people over 44. If there is medical evidence that this is necessary (didn’t see any), then just don’t accept donors over 44. Sounds like you just want our money. Pretty dishonest and will disenfranchise many people who have been on the list for some time. Please join me in dropping yourself from the be the match registry!!! Age discrimination is not acceptable for any reason.

    • Billy says:

      It is amazing to me that you would stoop so low as to try to get people to remove themselves from the registry. Be careful what you hope for…it may be you that needs them next!!!

    • Andrea says:

      I can’t believe this. I’m sitting here in tears, quite ashamed to be a member of the human race with some of you. This organization is prioritizing their limited resources. If the message above is unclear, ask questions, don’t put people’s lives at risk by removing yourself from the registry.

      There has always been a fee to pay for the cell collection and testing, during drives in the past, that fee was waived for some. Donors over 44 still account for 10% of the donations and it’s important to be available to those in need.

      We all need to swallow our pride and use this news to encourage more people to join the registry. I plan to make a donation to this organization today to show my continued commitment to this cause.

    • Danny says:

      Get your ego out of this argument and think about the patients. BMTs are a last resort for patients. It’s not something that comes easily even as a decision. Some patients can’t even handle the procedure so they try to avoid it as much as possible until it’s literally the last resort. Dropping your name from the registry only hurts patients and you gain nothing.

  26. Sarah says:

    If they want the registry to grow then why alienate all supporters and registry members over the age of 44? This could have been handled so much better. Just accept future donors 44 and under. Let them know a donation is appreciated but not required. I prefer to volunteer and donate to a charity where my resources, efforts and dedication is not so carelessly disregarded.

  27. Michelle says:

    I have been on the registry for over 20 yrs, signed up at a fund raiser for a local bit. We paid what we could at the time to sign up, and I did without reservation or hesitation. BUT, now that I am approaching 45 and read this email…..I am concerned that the organization is going to scare off (and anger) a lot of willing people. That could be catastrophic for your organization!!! People now a days at the age of 44 are not the average thinking of 44. Our society, health habits, eating habits are not what they were in earlier years…..in some cases we are healthier then 20-30 somethings. I understand that over the years thing degrade, such as marrow, but to charge NEW, YOUNG, HEALTHY, WILLING donor $100.00 just to join…..I don’t get it. Tests cost money, proceedures cost money….yes. But I was of the understanding that that cost was covered by the family, insurance. This could very much damage all the great work you have spent years doing. Reputations are hard to clean once you tarnish it.
    Although I have been in your registry for over 20 years…..I have never been notified as even a possible match. And evn though I’ve never matched anyone, I would still donate in a heartbeat. THIS IS SAVING SOMEONE’S LIFE FOLKS—– IS YOUR LIFE WORTH $100.00???? Mine is!!!
    I will remain on the registry for as long as you will have me, I’m in great health, feel younger now then I did 20 years ago, and would be honored to hopefully save a life! That is what it’s all about after all!!

  28. stephanie says:

    if you decide to remove yourself from the registry, the only person you are hurtng is the person waiting on the other end. Why did you join? As far as my age, who cares! the picture is much bigger than that. is it the fee? is it the age?
    Remember , the pateint’s doctors determine who is the best person to donate, not the registry. if it was your loved one, you would want the BEST donor available. if they felt a 55 year old was better, they would use them, but that is not the registrys call.

    When you donate money to research to find a cure, there is no guarantee that even with unlimited resources that a cure will be found, yet we continue to donate because it might be your small donation that could have made the difference. the registry is kind of like that,only you are the donation. it could be your sample that could be the one to be the breakthough they need to save a life.

    Instead of getting angry,this should be a discussion about how we can work together to come up with the best soluntions to help the patients achieve the best outcome. Some join the regsitry, some choose to sponsor the best possible donors and some people support the mission by volunteering.

    • Dale says:

      No, this IS about being angry! I’m angry that the “Be the Match” program thinks so little of those of us who have been a part of the donor liste for many years, AND they think so little of those who so desparately search for a suitable match. For some patients, the ONLY match may come from someone who is 45 -60 years old, yet the “Be the Match” program has now imposed a fee on those very people who often times cannot possibly afford a $100 tax to be a volunteer. Those people (meaning the 45-60 year olds) who may have been willing to volunteer to donate their marrow, and who may be the ONLY match for a needy patient, now will walk away because they can’t afford the tax. When I joined the program there was no fee, and I joined willingly, but I absolutely would NOT join today if I had to pay $100. So while the “Be the Match” program can imply that I am old and useless, which is highly offesive, the real victims of their decisions to impose a $100 tax are the people who will die because they couldn’t get a “best” match and in fact couldn’t get any match at all.

      Also, congratulations to the “Be the Match” program for thinking so little of people as to not even provide a decent medical explanation of why younger people make a more suitable donor. May be if the program took the time to educate their potential donors, and treat them as intelligent humans, we at least would feel somewhat valued.

      • Andrea says:

        There has always been a cost to join the registry, if you didn’t pay it, someone funded a drive to get names on the list. If you read the site, they explain what the costs are with testing the cells to get that initial match criteria established for each donor.

  29. David says:

    I’m saddened by this news, but not surprised. In an age where healthcare is gradually being rationed in favor of younger citizens over older ones in order to maximize a return on investment, it only follows that even those who will be called on to help will also be those who are younger.

    If I had been required to pay to enroll a few years ago, I would have had to pass since I’ve been unemployed or underemployed for nearly 4 years. I figured that being willing to help save a life was enough. At 56 years old, I guess that’s no longer the case.

  30. Joliene says:

    This campaign is an attempt to enroll younger members who may not be able to pay the entire $100 that it costs in testing to become a registered donor. It will still cost Be the Match $100 to register that donor but they will seek to cover the costs through other donations and sponsors. Older potential donors are still needed valuable members who most likely can afford to pay the cost of testing. Though younger donors have better success rates in donating, an older match that may not work is better than none at all. Please be aware that this cost to register is not new and is ONLY FOR NEW ENROLEES and they are simply waiving the fee for younger potential donors to encourage enrollment.

  31. Dale says:

    Yes, this fee IS new. I never paid one penny when I registered to be a donor.

    • Shadlyn Wolfe says:

      Well, it was $100 when I joined, and I am 30. It’s new…you’ve just been around even longer. (Or caught one of the donation drives.)

      You know, donation drives. Like this one.

    • Hank says:

      Dale…I joined about 5 years ago when a former colleague send out a plea to everyone he knew about his wife’s battle with Leukemia. I gladly paid the fee on the off-chance that I could help her, or perhaps some other individual. I was just over 40 then.

      Sadly, she didn’t make it but perhaps with one of our contributions, be it financial or through our marrow, someone else will.

      And really, that is all that matters.

    • Michelle says:

      They have always asked for the $100 donation, but not enough people donated,(like you clearly state Dale, “I didn’t pay one penny”). Too many people not paying one penny adds up and now the organization has to make a tough call, so now it’s viewed as a “fee” (although still a tax-deductibel donation).

  32. rose hayes says:

    I guess since I am over the hill and no longer needed at the ripe old age of 60, you can take me off the donor list. I can guarantee all you “ageists” would want my marrow if it was the only match you had.

    • Joe says:

      Rose- I had a family member donate to another family member. The first priority is safety of donors. As you age, the procedure becomes less safe. It’s the hard facts of getting older. The registry would never allow you to endanger yourself to donate. Therefore there is a cap to how long you can be on the registry. It’s not about ageism. When you are 60, it becomes more risky for the donor. Could you imagine if they didn’t have age ristrictions and allowed anyone to donate at any age. The first person that was unfit and donated and something catastrophic happened would ruin the registry. Sometimes you hace to concede for the better of society

  33. stephanie says:

    It isn’t a new fee. it has always been there. Through grants and fundraising they have been able to cover a lot of the testing, but it is never enough.

    As a person who has lived it and lives with the loss of my husband (he was 48 when he died)I have learned not to jump on the bandwagon when it’s sending a negative message. the mission is to save a life, not bash an organization committed to saving lives all over the world.

    As far as ageists go. This is not a question about your character or you contribution to society. it is about saving a life.I guarantee if you had a loved one on need and their doctor sat you down and told you that they were looking at two donors; one 25 and the other 58 to choose from and your loved one would have a better chance of surviving with the younger donor, you’d tell them to go with the younger. It’s about the younger, healthier cells. it’s about making sure that if that person only has one shot to live, they have the best care and the BEST STEM CELLS / MARROW. seriously, I don’t know why this is making you so angry.

  34. Michael says:

    To those wanting to remove themselves from the registry in protest, please don’t. This charity lost over a million dollars last year, doing blood work is expensive.

    How can they do the most good? By getting the best outcomes for the most patients with limited resources.
    We know from multiple studies that transplants from younger donors result in better outcomes. If they can only afford to sign up a limited number of donors a year for free, they should definitely focus on younger donors.

    There is no malevolence here, just hard decision making. If you are older, you still might be the one to safe somebodies life! To take yourself off the registry over a fee you don’t have to pay is immoral and unethical, especially considering your initial ethical motivation to help someone in need.

  35. Anne says:

    As a scientist, I understand that patients who receive cells from younger donors tend to do better, and I also know that one wants the best match possible. The physicians need to weigh the benefits of an excellent atch with the other factors, e.g. age.

    As a member of the registry (and I am 52), I am appalled at how ham-handedly this issue has been handled by Be The Match. There are a number of better ways one could have handled the new focus on younger donors, without alienating older donors.

    I ony hope that people do not remove their names from the registry, since in fact, only the patients will be harmed.

    • Joe says:

      I am curious, Anne How would you have suggested handling it? They have been fundraising and have limited funds. They need to stay in business and the best donors are young donors. What would you suggest doing?

  36. Karen says:

    I just recently became a member at 44. What disappoints me is that I will probably never be called. I understand that younger adults might be better donors, but I am concerned that they are not as stable with life. At 18 I was very mobile and would have been difficult to track down, let alone be able to take off from work to give a donation. Now that I have the financial well being to be able to take the time, be stable in my own home and easy to find, I am almost too old to help someone who needs a transplant. I guess life really is unfair.

    • Shadlyn Wolfe says:

      You’ve probably also just pinned down why they need do do this fee-waiving. They probably have lots of people between 35 and 60 signing up, because as you start to get older you start thinking more altruistically.

      Young people are immortal. As a group, they don’t think about individuals so much, but causes. They don’t think of charity, but getting themselves started in life.

      They figure $100 is a lot for one individual charity, especially if they have another, favored charity.

      Be the Match needs to do everything they can to overcome that, because young people can save even more lives, but won’t usually think to do so by themselves.

      They could have handled the press announcement better, but I do respect and understand what they are doing, and I hope that it works! For me, I’m going to try to use this opportunity to get my boyfriend signed up.

  37. Wordwizard says:

    I agree with Karen that this is a public relations disaster, and applaud the sample message that she was kind enough to write, but I DO understand the arithmetic that made Be The Match choose this course. There just doesn’t seem to be a RIGHT way to do things! When I was younger, I heard about a drive to add more minorities, sponsored by the family of someone who needed a match. I braved the attempts of people of color to give me the bum’s rush because my skin was too light for them, even though I WAS a member of a DIFFERENT minority than they were, and even though statistically, I was just as likely (or unlikely) to be a match. Though I did not match the person whose family paid to add me to the registry, I was asked in a matter of months to go for further testing. Apparently my partial match was popular. However, I still wait to see whether I will be a complete match before I age out….A determined family pulled out all the stops to try to find the 1 in a million they needed–and a similar case is probably why YOU did not have to pay for your processing, or a generous company. Don’t forget the bottom line is saving lives. Removing your name out of anger and pride is horrible. I am against age discrimination, but face it–older people ARE older, and not the SAME as younger ones. Blocking people over 61 is bad enough–I hope that will be changed–blocking people over 44 would just be worse. The sick people involved can not necessarily pick and choose.

  38. Tom says:

    I understand the math for looking for younger donors, but have you added in…

    1) Younger donors move more often
    2) Younger donors are more risk oriented
    3) Younger donors may be more likely to back out.

    I joined 1 1/2 years ago at a drive for a child, I was not tht match but I was after 6 months for another with AML. I am 47, I was called at 46 and donated.

    The average Bone marrow transplant costs over 650,000 and there is not enough room to cover all potential donor testing?

    Because it was free, I took a chance with a swab and a long shot, because my 46 year old blood gave another a chance at life and not spending life in a hospital getting sicker, I donated and would again.

    Because of this idea based on age, you may rob someone of the chance by offending a potential donor and turn a match into a missed opportunity and a death sentence.

    • Shadlyn Wolfe says:

      I don’t think the registry charity gets paid out of that $650,000. That’s doctor/hospital/equipment/drug (and probably a good chunk of profit) fees.

      The registry does their testing out of donations and fees…$100 at a time.

  39. Marie says:

    When she feels up to it, I think we would all like to hear Robin Roberts speak about this in detail. Would you be so kind as to ask her to do that?

    I am almost 57, already registered and would consider it a privilege to donate if needed before I reach the cutoff.

  40. Amy says:

    I am confused by the anger of the people commenting under this announcement. It states that Be The Match is going to focus the majority of their efforts to recruit younger members to join the registry.

    And, to grow that younger segment, they are going to waive the fee to join. However, that fee is going to be paid by someone somewhere. It still costs money to get on the registry for these younger individuals, but the cost is going to be absorbed by Be The Match and hopefully their fundraising efforts in other areas will support this effort.

    If you took the time to join Be The Match in the past — no matter what your age — you owe nothing more in terms of a monetary donation. You’re on the registry and could be a potential life-saving match for a very ill person. Your potential charitable act of being the match and donating your bone marrow is priceless. You have the ability to give the gift of life!

    Why would you spitefully take yourself off the list because they are charging NEW registrants over the age of 44 $100 to join?

    You do realize that there are all sorts of restrictions for donating blood. Do you shake your fist at the Red Cross when they turn you away because you got a tattoo in the past year or lived in Europe for more than six months during a certain time period?

    Please remember why you joined Be The Match in the first place. Please continue to support an organization that works to save lives.

  41. Brandy says:

    I’m glad there are some sane and logical voices in this crowd of crap responses. To hear the anger from all of you, well I can’t even read it all. You’re all so bitter. It’s disgusting. GROW UP! Apparently half of you can’t even act your own mature age. It’s a shame, too, the way some people act behind a computer screen. Makes me think of some of the HOUSE episodes when family members refused donations from their JERK relatives.

    Anyway, I’d like to address this “young thing”
    I’m 30. Whether or not you still think that’s young, for where I am in life it is, I’m full time in college, no kids, never married. and travel a lot. I joined Be The Match (BTM) when I was 27/28 years old, I’ve lived in 3 places in those past two-ish years. I’ve updated my registry each time I moved. You may think that “young people” aren’t responsible, are hard to get a hold of and/or would “flake out” but you are wrong. We don’t change our email addresses. We rarely if ever change our phone numbers, even when moving to different states. And being tech savvy means young people are able keep things up-to-date online often (in 95% of the people I know between the ages of 19-42) by use of their smartphone or tablet (ie ipad, kindle fire, samsung note).

    But the other thing you are forgetting is that the youth, the people from my generation, generation X and the people from the generations younger than me WANT TO MAKE A DIFFERENCE. This drive to have them join has motivated me to contact my college Campus Life & REC department and have them set up a drive, it’s not enough that that I occasionally tweet or facebook about it anymore. I didn’t know you could have BTM drives! That makes it accessible to a more diverse group of people-big city students!
    Instead of being angry, please realize this will allow people who have been afraid to join because of the wording regarding the $100 tax deductible fee on the website.

    For those over 44 who would like to become a NEW potential donor, no offense but, I would like to think that they can afford the $100 it cost to do the swab testing and cataloging. If not there are other ways to volunteer, and there is always waiting until a drive call is put out for potential donors that meet certain ethnicity/characteristics.

    I hope that spreads some light on the “youth” movement. Oh and by the way, when I joined it was because we discovered a friend of a friend developed a very very rare blood disease, somewhere around a hundred+ people my age got tested in his state at drives for him and unknown numbers around the country that are friends with him signed up with BTM. Please, don’t think for one second that we aren’t responsible.

    • Tracey Martinez says:

      You take an awful lot for granted. If, as you say, you and your peers are so altruistic, you and they should be more than happy to pony up the $100 too. You seem to indicate that you are happy to sign up to donate as long as it is free for you. Our argument is that why should ONLY older donors, apparently likely not to be called, be the only ones to pay? If we won’t be called, the maximum age should be lowered. Simple as that.

      • Shadlyn Wolfe says:

        You might be called, but you have less time to be called and will be passed over IF ANOTHER CHOICE IS AVAILABLE.

        Not the same thing as not being useful.

        I paid. I COULD have been free now, if I’d waited. I’m still glad I paid. Rather than whining about how unfair this is to me, to give away something that I had to pay good hard money for, I am going to try to get someone I know to sign up.

        Because it’s not about me. It’s not about you. It’s not about age, except in the bluntest terms of fact. It’s about keeping someone alive.

        If you’re not on the registry yet, Tracey, then I suggest you keep an eye on the site until the next time they have a massive donation and waive fees for everyone. (It happens, from time to time).

        If you are on the list, then try being glad for the lives that will be saved if they can get more people to register earlier in their lives, with you not having to pay a penny more unless you choose to donate again.

  42. Tom says:

    Amy, I did not state I would withdraw my name, I said if given a chance I would donate a second time or more.

    I think the big impact is by setting out a target group it can slight or devalue the worth of an older first time potential donor.

    it sends a message if not intended… implied that the older person is of less value, so if you insist on wanting to help, you have to pay versus others.

    And the blood analogy is not the same. Do they charge for older blood and not younger? no.

    We are all here because we care, Those stating a reaction are doing so because they are offended or see that it will offend others and may harm the number of donors.

    Public relations is polling the public and based on reactions.. making adjustments. People stating pro or con on the matter do in a valuable way, help craft the outreach.

    • Shadlyn Wolfe says:

      No, they just won’t take blood if you’re a man who’s ever had sex with another man. Or a woman who’s had sex with a man who’s had sex with another man. (And it’s not a time limit, even. It’s an “ever”) Or…

      Yeah, blood drives discriminate all over the place. But I guess as long as it’s not about age, it’s okay.

      I LOATHE the blood drive discrimination, and it makes FAR less sense than this.

      But before I had to be sidelined for health reasons, I gave blood anyway.

      • Juanita says:

        Shadlyn,

        I hate to have to agree with you. Close to fifteen years ago my brother-in-law was shot in a drive by. In response my husband and I donated blood and became members of the “Gallon Club”. We donated like clock work for many years. Then we moved and all of a sudden there always seemed to be a problem when I tried to donate at the two yearly blood drives sponsored by the students at the local college.

        It was at one of those drives that I decided to become a member of BTM. So for those people saying that young people are not altruistic, I would have to say that you may just be making a HUGE generalized assumption that happens to be extremely incorrect and in the process promoting and practicing AGEISM, the very thing allegedly triggering your reaction. The students at our local college are extremely involved in charitable work. They hold fundraisers for various causes each year, they go into the city (San Francisco) at least monthly to feed the homeless and hand out whatever “necessities” they have managed to make or collect that would help or improve the life of the people they are serving.

        Sadly, like you I no longer donate blood and because of my age (47) it seems that my chances of donating marrow are getting slimmer. But even though I think that this decision by BTM was not presented in the best possible light, I plan to stay and will request both of my daughters to join even if I have to pay the fee for both of them.

        I think that as humans we need to pull together in spite of any miss-step made by any organization. We will never know if the life saved is the one that could turn out to save humanity as a whole, unless we do everything we can to save each and every life we can. NO MATTER THE COST TO OUR POCKETS, EGO, RACE, GENDER, AGE or anything else that makes us individuals!

  43. Rory says:

    I joined the registry to help folks. I have been pleased to know that every time I hear about someone needing a donor that I am registered. I appreciate knowing that there is more success with donors ages 18-44 than older donors. I understand that the organization must become more focused in outreach to increase the chances of successful donations. Though there are many that wished you had dropped the older age range to keep things simple for them. It is not that simple, because if someone is a match and older; they are still a match. Keep up the good work! I will do my part to spread the word to everyone.

  44. Phyllis says:

    I joined the registry about 20 years ago when our church family obtained donations for the testing when one of our members was seeking a donor. I have been called twice as a potential donor and have had the additional blood testing. While I was not a match for the first patient, last year I completed additional screening and was told I am a match for a teenage girl, but her physician then felt she was not ready for the procedure. I turned 60 last month and regrettably may no longer be considered for this patient or others. I still believe in the organization’s mission, but also feel that requiring older registrants to “donate” $100 is ridiculous and should be reconsidered. It would have been better to stop taking registrations from the over 44 group and suggesting that those of us who are middle aged or older should support the cause by recruiting the young and holding fund raising events.

  45. Betsy says:

    I am almost 56 yo and joined the registry when I was under age 44 because a little girl at my church way dying of leukemia. You guys held a drive to get people on the registry and AU least 100 people signed up, of all ages. Then as now I would not have been able to contribute the $100. I think what you are doing is important, but to tell those of us over age 44 we are “undesirable” is inappropriate. Either focus your efforts on those under 44 or don’t. Today would I be told (if I were signing up to be tested) “contribute $100 or you can’t be on the registry”?

  46. Mike says:

    I have been on the list for years and though I have always been willing and happy to donate my time, I find it offensive that new registrants outside of your preferred age group are being called on to donate their money as well as potentially their marrow. I expect no remuneration if I am matched but charging people to donate their marrow is an egregious request to make of a new volunteer.

    If you need money for the testing, that is what normal fundraising is for, not demanding that your volunteers pay for the privilege. The volunteer fire department never asked me for money to fight their fires and they paid for training to boot.

    • Shadlyn Wolfe says:

      EVERYONE was paying for the privilege before this, except during special drives (where fundraisers were paying.) That’s the reason my 29-year-old boyfriend isn’t on the list RIGHT NOW.

      If you joined recently and didn’t pay…someone did. You caught a special drive, or the family made a donation. But the FEE isn’t new, they’re just announcing a new category that it is waived for.

  47. Craig says:

    I certainly understand choosing the match with greatest chance of success (closer or younger). But something I have not seen discussed is what percentage of the time there is only a ONE match in the database. If this happens, then it seems age would be irrelevant. As someone in need, I would certainly want that ONE possible donor available to me. Anyone have these statistics?

  48. Sunshine says:

    I joined the registry, knowing full well that at age 50, my “mature marrow” was “less than ideal.” I read the literature and younger donors, between the ages of 18-40, have always been in the greatest demand. The young women are also often at a place in their lives where they cannot donate, due to pregnancy, nursing, or attempting to become pregnant. Obese individuals are also excluded (and the threshold for “obesity classification” fits quite a large segment of the population.

    I joined the registry because I lost my mother to Acute Myeloid Leukemia (AML). A bone marrow match might have saved her life. There are few effective treatments for AML. If there was a chance I could help someone, even at my age, I would be overjoyed. I also volunteer for various cancer charities, most predominantly, the Leukemia & Lymphoma Society. I have now met countless individuals who need or have needed marrow matches but none were found before they succumbed to the disease. Please do not let this (very poorly crafted) announcement discourage potential donors. The Marrow Match Registry is not being elitist of ageist. The younger marrow has a greater chance of being successful at saving a life. Period.

    Both of my adult children are registered with Be the Match. They are in the highly desired age category. My husband was going to register but now it obviously is really not necessary. (He will be 55 next month and his marrow at the upper end of usability anyway.)

    The Marrow Match registry needs more young people of color, all nationalities, to increase their effectiveness.

    I agree that this announcement was worded very insensitively and could have been done SO much better. Please do not punish all the cancer and leukemia patients desperately hoping for a chance at life just because “Be the Match” hired the wrong public relations firm.

    On behalf of leukemia and cancer patients everywhere, thank you to all those of you who have willingly stepped forward to be registered.

  49. Colleen Nguyen says:

    I have to agree with those who think many commenters are taking this a bit too personally.

    Think of a well-known charity such as UNICEF, which, among many things, sends school supplies to children around the world. They need your monetary donation. What they DON’T want is you to donate old pencils and notebooks you found cleaning your kid’s room. You might think “well, they’re a charity, they should take what we give them.” But processing donations of 10 pencils each costs money, more than buying the pencils themselves.

    In the example below, the giver wants to “do the right thing” and donate, but that does not mean they determine the terms of the giving to the harm of the charity.

    This is what Be The Match is doing. They understand donors over 44 will be called upon 10% of the time. But they don’t just need just your in-kind donation, they really need cash to help process this in-kind donation. If you say “this is unreasonable, they should spend their money to raise more money” then you are disregarding the fact that running an organization like this costs money and not all donations are created equal.

    Yes, unfortunately older donors have in-kind donations of less value. BTM I’m sure feels terrible that they need to require a monetary donation, but would you prefer it suffer as an organization just so you can feel good about putting yourself in the database? It does feel good to donate and know you are possibly making a difference, but if your donation costs more to process than it is worth, please don’t take it personally when they ask you to cover the costs that your in-kind donation incurs.

  50. Hank says:

    You know, I keep reading this email to find the supposed “insensitive” remarks. To me, a lot of you must have some really thin skin because you are inferring an awful lot into this communication. Let’s review:

    “Recruitment efforts are now focused on individuals ages 18 – 44. Why? Because transplant doctors request donors in this age range more than 90 percent of the time. ”

    Hmmm…that doesn’t appear to be a policy set by BTM. It is a practice in the medical community. Hey…let’s just boycott the entire medical community because doctors obviously don’t like older patients (even though we’re the ones paying for their jaguars with our frequent medical visits…but I digress).

    “Multiple studies examining the impact of donor age on transplant success show that younger donors result in better outcomes for patients,”

    Hmmm..ok, this “insensitive” statement is just a fact. Not BTMs fault. Not even insensitive if you don’t have a chip on your shoulder. Maybe we should sue Father Time. It’s his fault…throw Mother Nature in there too. After all, there’s gotta be someone we can blame for getting old!!

    “Every committed registry member is valuable because each one may be a match for a patient.”

    Let’s see…according to BTM, we’re valuable. Why…you guys are right…those jerks. How dare they call us old farts valuable!

    “The change we’re making is focused on recruitment practices, so we grow our registry with members most likely to be called to donate.”

    Well, now this just sounds like a smart business decision to me. As I pointed out earlier, it’s not only that the medical community seems to want donors in this age range, it’s also that they will be on the list longer. That’s a longer window to help more people. But hey…why let the facts ruin a good story. There’s apparently no place for logic and reason in this debate.

    “Those ages 45 – 60 who are interested in joining the registry are welcome to do so online at BeTheMatch.org/join with a $100 tax-deductible payment.”

    Ah…now we’re getting somewhere. Why should we have to pay when someone else is getting in for free? That’s the real issue right. We deserve something for free too!

    Well, you know what. Life isn’t fair. Some folks will also get something for free that someone else has to pay for. Get over it. You all should be old enough to know that. And I gotta tell you…that whole link between age and wisdom…based on this thread…not seeing it. In fact, that youngster Brandy schooled you all from where I’m sitting.

    Let’s face it…it’s not the wording of this PR that is insensitive. It’s your own insecurities, ill-temper, and frustration at getting old. Trust me…I get it. But let’s not let our own baggage potentially harm good folks who are trying to do a good thing.

    • Tracey Martinez says:

      It has nothing to do with feelings at all. If they don’t want or need older donors they should just lower the age. They seem to present no rationale for NOT charging the younger donors other than to entice them to join. If the younger donors were truly interested in helping, I’d think they, too, would be happy to pay. That way the fundraising dollars would go even further.

      • Hank says:

        Hi Tracey…it’s not that they don’t want or need donors in the 44-60 range. As they say, and some other comments have noted…if there is only one match and it’s a 58 year old, the patient and doctor would be thrilled to take that donor. That’s why a cut-off doesn’t make sense, nor does someone pulling their name off the list because they are offended. An older donor could be the “one”.

        This is more about opportunity cost. It’s Sophie’s Choice…if two people want to sign up but you can only afford to test and qualify one, you take the one that matches the biggest need. The need might be for younger donors who are more likely to be called, or for minorities because there is a shortage of viable candidates that fit that profile, or some other reason.

        And the rationale for not charging younger folks is EXACTLY to entice them to join. I think most people when asked to join are probably first taken aback by the fee. After all, I’m potentially risking my health, albeit for a good cause, AND they want me to pay? I’ll confess that I had that thought at first, and I have the financial means to donate (and did by the way).

        In a perfect world age isn’t the determinant as to whether they impose the fee or not…financial means would be. But this would never be implementable.

  51. Wendy says:

    I never paid $100 when I signed up 12 years ago? I would not have been able to sign up if I had to pay that.

  52. Elaine says:

    My son was diagnosed with AML in 2010. This last May he received a Stem Cell transplant and is now Leukemia free. Without that transplant he would most likely have died within weeks because they couldn’t keep him in remission. We know his donor was a young person, but I have to tell you that on the day we were told that there was a donor available, I would not have cared HOW OLD they were. Because he received this gift from someone he didn’t know, my son is now home with his wife and children.

    When I signed up with Be The Match there was a “suggested” donation of $100. I could afford to pay it and I did. I continue to donate. It is horrifying to think that a match for my son might have been prevented from signing up and donating because they couldn’t afford it.

    Since all the publicity with Robin Roberts, there has been an increase in potential donors. I would guess that the majority of these have been older. Could it be that the organization has been overwhelmed with all the testing necessary and caught short in funds to cover it?

    I disagree with how this was handled, but please DO NOT remove yourself from the registry. YOU could be the answer to another Mother’s prayer.

    • Hank says:

      Elaine…I’m so glad that your son found a donor in time, and pray for his continued health!

    • Sunshine says:

      Elaine, I think your comment about the publicity surrounding Robin Roberts is exactly spot on. Her audience demographics are likely more in the range of her own age (she is slightly older than me, she will turn 52 in four weeks). So, while I have many younger friends, as I am sure so does she, women between the ages of 40-60 are likely quite drawn to her story. Be the Match may be overwhelmed with new potential donors in my age group when they really need the age group of my adult children.

      The fee has *always* been there, it just sounds like a lot of people either could not afford to pay it or were part of a group effort for a friend or campus-wide effort, where the fee was underwritten.

      I am so grateful your son is doing so well! I lost my mother to AML. Without a stem cell transplant, at this time (hopefully, that will change soon), the disease is very often fatal.

      “Be the Match” could have handled this far better but the reason we all signed up is still there: Our bodies produce something (marrow) that cannot be replicated in a lab. Without it, people WILL die. If we match, we can donate marrow and save a life. Isn’t that all that matters? Really, please tell me what else matters?

  53. Hank says:

    Wendy (and others)…I get that not everyone has the financial means to contribute the $100. As I mention in my first post…this isn’t like Susan G. Komen and Breast Cancer, which are in the news more than Lindsay Lohan. It’s a much smaller organization that needs word of mouth advertising and has much more limited resources.

    People are often introduced because someone they know (or friend of a friend) got sick. Many times companies, churches, and community drives are organized to help underwrite the cost for donors.

    Perhaps some of you who are really offended by this can approach BTM to organize some fundraising efforts to offset the cost specifically for older donors. Or organize something in your community to sign up older donors with fundraising to defray the cost. Always better being part of the solution rather than just complaining about the problem.

    • Lisa says:

      Hank – with the ugly comment you made in the last paragraph of your 8:04 lambast, who would want to donate? What goes around comes around. One day you will need one of these “geriatric” people that you are being ugly to. Yes, you raised some good issues, but your last paragraph was totally uncalled for.

      OLD people are mentors. OLD people are still performing research for cures. OLD people are valuable to this society, yet you have just dogged them. I will pray for you!

      I also pray that you do not think you are advocating for BTM because all you are doing is turning people off. “Lindsay Lohan?” Really?

      • Shadlyn Wolfe says:

        Ugly comment? That he gets how frustrating it is to get old and understands, but that it’s immature to let that get in the way of helping people?

        Yeah. Real ugly. Telling the truth, and all that.

        • Shadlyn Wolfe says:

          I should clarify, because my wording here upset me a little bit when I re-read it.

          Old people have tons of value to society and ABSOLUTELY deserve a high quality of life, just like everyone else.

          But physically, are they as peak and healthy as young people (on average.) No.

          This is the truth. You aren’t devalued by recognizing the truth, any more than I am devalued as a woman by recognizing that my muscles aren’t as strong as the average man’s.

      • Hank says:

        Lisa,

        Ugly is removing your name from a list and quite possibly sacricing another person’s life because you felt slighted over the wording of an announcement. The saying “cutting off one’s nose” comes to mind. Uglier still is boycotting or encouraging others to do so, which is akin to yelling fire in the proverbial theater.

        My comments were not an indictment of ALL OLD people. If you missed it, I am in this age group. They were aimed at those who read not what was stated or even implied. They inferred, and the problem with inferences is that they are colored by our own bias, beliefs and backgrounds. Unfortunately we see what we want to see sometimes, instead of what is actually there.

        Further, a WISE old mentor would surely preach humility and laying aside one’s ego and wounded pride for the greater good.

        And finally, my Lindsay Lohan comment, if a bit flippant, was intended to illustrate that while some charities receive a significant amount of attention and financial support, this unfortunately is not one of them (today, hopefully that will change one day!).

        And lest I be accused of being anti-Breast Cancer Awareness, charities devoted to stopping this hideous disease actually receive more of my support as my step-mother, who is really a second mother to me, has been fighting Stage 3 Inflammatory Breast Cancer for nearly 5 years. She has undergone chemo for longer than anyone on her medical team has ever seen, and will likely require it for the rest of her life. She is 62.

        So, please, don’t pray for me. Pray for her, and all others who suffer life-threatening illnesses.

  54. Eric says:

    WOW, what a poor way to state your intentions to charge older people to join, you need a new publicist. I joined in 1994 and it did not cost me anything. I have been making sure my information is up to date if I move, I guess I will stop doing that now that I am no longer wanted, I was never called and guess I never will be. Good luck and adios.

    • Shadlyn Wolfe says:

      Wow. Just….wow.

      You may be old, but you’ve missed mature. It costs you nothing to stay up-to-date and possibly save a life, but you are offended so you will remove that chance?

      I am 30 years old. Last year I PAID $100 to join, because the fee ALREADY EXISTED and there was no waiver.

      My feelings aren’t hurt that they’ve decided to make a change now that could have saved me money then. I’m going to act like the grown-up I’m supposed to be and instead convince my friends to join, too.

  55. Lu Ann Ferguson says:

    I find it disturbing and indicative of the general ability of the public in the US today to be able to read and discern what they’re seeing. So many of the comments say something along the lines of “if I have to pay, I’m leaving!” NOWHERE has the Registry asked anyone already on the Registry to pay! Read, folks!

    I plan to stay on the Registry until I’m no longer fit for donating. I’ve been on the list for 20 years and have yet to be called, to my dismay. Now I’m going to get my kids to take over for me. If I have to pay something so that they can be listed in order to help someone, so be it. If I remember correctly, someone covered the costs when I joined at a drive.

  56. Mike says:

    All I can say is WHAT!!!!. Maybe the donor registry needs different leadership? I have donated many pints of blood over the years and have never been asked to pay to do so! Yes it costs money to maintain the registry. If the patient was getting the donation at no charge, I could see the fee. This is just the same as all those little fee’s like the phone company collects on their monthly bill. Decisions like this is why we need healthcare reform!

    • Anonymous says:

      Mike- your blood will be used by a patient. That’s a certain commodity and the Red Cross (or hospital) doing the testing will get compensated financially for your blood. But when you sign up to be a marrow donor, there is a very low likelihood that you’ll actually ever donate. When you sign up, the test that you take to find out your marrow type costs $100. That is money that the orgnaization must pay in order to add you to the registry. Where does that money come from? it’s not unlimited funds. I wish that everyone that was complaining would consider fundraising instead. Maybe if there was a stronger fundraising campain there wouldn’t be a need to decide who can join w/o paying and who had to pain. This is basic economics in a non profit

  57. stephanie says:

    “Are we not all one in the brevity of our pilgrimage here on earth? Are we not one in human trial and weakness? … Let us then devote what we have of these to one of Life’s best privileges, the helping of our weaker brother and sister while life and power are yet ours.” —Kate Levy, M.D., 1914
    Member of the first board of directors/ City of Hope

  58. stephanie says:

    “We bear witness to the responsibility of each of us to be our ‘brother’s keeper.’ This means more than the social obligation of rescuing those plunged from the bright sunshine of health into the despairing darkness of disease. It involves a framework of social justice, emphasizing our larger social responsibility and man’s humanity to man.” —Ben Horowitz, Torchbearer’s Creed, 1959

  59. Field says:

    I was called last year, at age 55, to be a bone marrow donor. Will donate again if called, but I do find the distinction unnecessary and a bit disturbing.

  60. JD says:

    If BTM is trying to ENCOURAGE more donors under age 44, charging those over that age is a strange strategy to take. Clearly, they are trying to DISCOURAGE so many over age 44 from registering instead. I completely understand that. They want to spend their resources where they have 90% of their successes.

    I am over age 44 but I recently registered for free, after seeing a news article that described how more biracial donors are needed. I am biracial. However, if I had to pay $100 to register I would not have. Simple as that.

    • Shadlyn Wolfe says:

      But the fee already existed. If you registered recently for free, it was because you were grabbed under one of the free drives (like this one) that were either universal or for people meeting certain criteria.

      This announcement isn’t announcing the fee. That’s old. This is announcing a group who doesn’t have to pay it for a while.

      • JD says:

        Sometimes the fee exists; other times it doesn’t, obviously. When I registered, there was no fee. Yes, I understand the COST is still there, but there WAS NO FEE. Judging from the comments on this blog, the fee is often suspended.

        I imagine BTM gets most of their registrants when they don’t charge a fee. $100 is a steep charge for many.

        Why pay retail when you can just wait for a sale?

        • Sunshine says:

          “Why pay retail…?” I do not know whether to be sickened or just sad.

          Thank you for registering as a biracial potential donor. More potential donors from all races are desperately needed. The “fee” is sometimes called a “donation” but it is always there. It has been there for as long as I can remember and I am 51. I looked into registering twenty years ago and the fee/donation was $75 then.

          The problem with “just waiting for a sale” is that people are dying every day from treatable diseases, namely Acute Myelogenous Leukemia (AML). My mother was not a candidate for the stem cell transplant, as her age and the progression of her leukemia were too advanced when they were discovered. However, if she had been waiting for a donor, she only lived 71 DAYS from diagnosis to death. What if her potential donor was “waiting for a sale” on day #72?

          To “Anonymous” who has such strength of convictions that he/she will not even sign his/her name, I *do* fund raise for this cause, and for several other cancer causes. It is an active part of our life.

          Be the Match should have handled it differently but I totally understand why they have made the business decision that they have made. More lives can be saved if they can recruit younger donors. Older donors? (like myself) Thank you for your ongoing contribution. You would want the very best for a patient in need and young marrow is more medically effective. Donors over the age of 44 will make fantastic fundraisers.

          “Why pay retail?” Bone marrow is priceless. Saving a life is priceless. It is the least we can do for our fellow human beings.

          • JD says:

            So “Sunshine” is you having the strength of conviction to sign your own name?

            We are on this blog because we are both registered to be bone-marrow donors. None of my loved ones have ever needed bone-marrow transplants, either, so it didn’t take a family catastrophe to prompt me to register. You know nothing about my other altruistic activities, and I frankly don’t care about yours.

            Many, many of us cannot afford to pay retail prices for things, even to be a bone-marrow donor. We wait for sales out of necessity; clearly you don’t understand what that’s like.

            You are an insensitive, judgmental hypocrite.

          • Sunshine says:

            To “JD” — Sunshine Taylor IS my name and these ARE the my convictions. I am neither insensitive, nor a hypocrite.

  61. stephanie says:

    It isn’t like other non-profits where you make a donation and go on your way. maybe you could see this amount as a way to PAY IT FORWARD.
    Are you offened when other non-profits ask you to contribute? if you want to contribute to cancer research, you can donate directly to a research facility, you don’t have to go through a different organization. In the case of bone marrow donation, there is no other way to save a life, but through testing donors for compatibility.

    I’ve looked into the eyes of people who could not find a match and the desperation they feel knowing that they might die (my husband). All I can say is to be strong and as long as people continue to join the registry there is hope.

    On 9/11/2012 this country came together during a time of crisis. They helped one another, they gave blood, We became one! there IS a humanitarian crisis when there are 10,000 people who are frantically searching for a donor. This is no different. I would hope that you wouldn’t want to wait for a sale before trying to help someone stay alive. Could you look them in the eye and tell them sorry, “no bargain, no life”

  62. Robin says:

    I’ve been trying to get one of my friends to join the registry, because he is an unusual ethnic mix (Nicaraguan/Mexican/Welsh/other European), and I understand that people are most likely to find matches among those of similar ethnicities. But he’s 50 now, and doesn’t have an extra $100 to spare. Although I understand this policy, I think A) the way the new policy is presented is a disaster– clearly, many loyal consituents feel devalued, and B) you might consider exceptions for minorities or people with unusual ethnic backgrounds/combinations that may be poorly represented in the registry.

  63. Carol says:

    People! Get over yourselves! There is a limited amount of money for processing the tests for potential donors. Apparently doctors have a preference for younger donors. And younger donors will likely be on the registry for longer than someone older. It’s simple math. Back when I registered over 20 years ago, there was a fee, but it was waived when I registered because someone fronted the money. The cost has always been there, though often generous people have made it so you didn’t have to pay it. The point is to maximize the chances of successful donations. And there isn’t unlimited money to do that. Yes, it would be swell to have everyone of every age register and be tested, but that costs more money than what is available. Instead of complaining and being offended, why don’t you get the college students you know to register.

  64. Erin says:

    Be the Match has always had the optional 100.00 donation to off set the testing fees when you join. It just was not mandatory.
    I believe it should still be optional on all applications if less than 44, and if you must mandatory over 44.
    In reading through this long thread it, at least to me, has hit a nerve with a lot of people.
    But those of us now over 44 to try to “prove something” by taking their names off the list serves no purpose. If at 48, I am the only match, they will use the marrow for transplant and save a life. As has been the case if you have read this blog.
    I am also an organ donor, have been since I could be one. If there were a charge for that registry I would pay that too.
    I am a nurse. My job is to make a difference in many lives. And I have.
    Everyday. That sticker will never come off my license, as I will not be pulling my name off Be the Match. Nor will my husband.
    I have lost two older brothers way to soon…19 and 35. Waiting for a transplant.
    You joined for a reason. At least don’t intentionally hurt the organization that has already done your testing.
    Again, although doctors prefer younger donors, they will take a donor who is over 44 if it will save a life….Any day.
    You never know what the future will bring.

  65. Kathy says:

    I have been on the registry for 22 years and $100 is a heck of a lot of money to ask a person to donate. I don’t have a personal connection with bone marrow transplant and faced with such a large cost, I would definitely not sign up today but would instead give a donation to another cause.

    As someone who’s older, I have lots of lab results that are comprehensive & current. Couldn’t existing labs be used to reduce the cost of putting someone on the list?

    And yes, I do agree that the phrasing is one step up from telling those 44 and over that they’re worthless.

    • Sunshine says:

      Sadly, existing labs could not be used to “put someone on the list.” The DNA tests are extremely specific.

      • Kathy says:

        I am about to be an organ donor, so I have a pretty complete set of labs. I signed up at a drive 22 years ago & was asked about 2 years ago to arrange & pay for testing since they didn’t do the full range of tests that they do now. I didn’t have the money, so I assume that I’m not on any active lists.

  66. Andy says:

    I agree with both sides!

    It feels insulting to be unwanted, it looks mean to say a donor will be charged $100 for donating, and it even makes me feel like a dope to turn 60 soon so that I’ll be forcibly dropped from the Registry (their longtime policy).

    But ALSO – it is insulting for a donor to tell the charity what gifts it needs, it looks mean to say that we’ll waste the charity’s limited funds in order to make us donors feel more wanted, and it should make us feel like dopes to divert the Registry from focusing on what will cure the most transplant recipients.

    Everyone is entitled to their opinion, but I don’t see how ANYone can ignore any of the above points. You’ll all just have to see how much it’s worth to you to permit the Registry do cure the most people in whatever way works.

  67. Mary says:

    Agree with what many others have said–what a PR screw-up/nightmare! My guess is that the overwhelming response to Robin Roberts’ story inundated Be the Match with less than optimal (44+ years old) donors, and the cost to process the matches was greater than the probability of a match for a donor. This should have been factored early on into the website and the online screening process.

    Shame on Be the Match for handling the situation as it has. Maybe it should consult with the Susan G. Komen Foundation regarding their experience in alienating loyal supporters.

  68. Donna says:

    Wow, I understand the financial issue but it’s hard enough to get people on the list already. If they have to pay, they will think at you must have plenty of donors so you don’t need them too badly . I got on the list a while back, then started getting my young adult children to join. Im afraid you just cut your new member numbers way down. That cuts the chance of a match down. Instead of charging people older than 44, why not concentrate on more fundraising and donations. Anyone waiting for a match to be found will be saddened by these new guidelines. I was so excited about the chance to be a donor and still am, but disappointed.

  69. perrijo koliadko says:

    this is upsetting to me, i am 50 years old and love that i have been on the registry for over ten years….and i never paid to join. you are shooting yourself in the foot by charging anyone to join…we are willingly giving of ourselves to save the life of a stranger….i may be older, but i just may be the only match for someone who needs a transplant. what is next? will we have to pay for the harvesting of our marrow as well? i urge the powers that be to rethink this.

  70. Kim Schaefer says:

    I am proud of being on this registry. If you believe in the organization, and better than that, you BELIEVE in the ill folks who didn’t not ask or have a choice in getting ill and having to hope for folks like ourselves to step forward and be on a registry such as this. If you have watched a loved one suffer from needing a transplant,or are unfortunate in your future and have to experience it yourself- I assure you that your viewpoint would change, and 100. fee on an age restriction would not even be an issue. In todays world there are ideal ages for everything, to drive, to buy or see certain movies, to get your ears pierced. Don’t be frustrated with such a wonderful program. After seeing this today (yes I am an early 40’s woman) my 21 yr old college student iss going to get on the Registry also. Wishing you all a good day.

  71. Sue says:

    I am a 48 year old nursing student. My son had a stem cell transplant last year. While sitting in the infusion room with my son, I visited with a dear family who was waiting for a match for their 65 year old mother, I have often wondered if they ever found one. I was grateful to join the registery because of donations of others, and that my health allowed me to be accepted. I would never feel offended that younger bone marrow would be more beneficial to an individual fighting for their life. The truth is I can do more for this organization now than just wait to be needed as a doner! Just think of the lives that may be saved by increasing the registery!

    When I read the email waiving fees for young doners my first thought was how soon will my schedule allow me to help organize a drive at the university I attend. I encourage those of you who are upset to look outward; to see this as a positive change, and to use your talents and energy to organize a drive that has the potential to save lives!

  72. Chris says:

    I would like to see an actual invoice from the testing company. I doubt that BTM pays $100 per test, that’s just what they would like us to pay. I understand making a profit, but show us the facts.

    • Danny says:

      I’m sorry but you don’t know how much healthcare costs, do you? $100 seems very cheap compared to some of the routine blood work done at my cancer hospital, mind you a famous one in the world. Just think, a doctor visit can even be $50 I believe right?

  73. Laura says:

    So, am I still ON the registry? I signed up years ago, but now I am 56 years old….so what is my status?
    I also agree that charging people to be on the registry is wrong. If my status is non-existant, you can bet that I will not be paying $100 to probably NOT be called. Shame because I just may be someone’s last chance that would never be found. I was unemployed for 17 months before finally landing a job earlier this year, and I am still picking up the pieces of my financial downturn. All during my unemployment, I gave platelets regularly at the Blood Center,and had I been called on to give marrow, would have done it in a NY minute, but right now I just can not AFFORD the fee to keep me registered.

    • Danny says:

      You’re still ON the registry. The payment is meant for the testing procedures to sign someone up, that’s all. It’s a database of your list of HLA antigens. Charging people may seem wrong but it’s the hard life of the business world. If you can’t pay the labs to do testing and all these other costs, you would have to start prioritizing. I thank you for your commitment. It’s understandable that if you can’t afford it to not join had you not already been on the registry. Thank you for your platelet donations at NYBC. I myself go there for red cell donations mostly (I get scared of platelet because of the needle being in me for so long but I’m working on that fear.)

      Again, no payment to stay on the registry. The payment is just what’s needed to cover testing for new registrants.

      • Kathy says:

        I wonder if those of us who signed up years ago are really on an active list. Several years ago, I was asked to pay for further testing since they didn’t do all of the tests then that they do now. The testing was just for the list, not a possible match. I was recovering from a serious flood, so I didn’t have the funds to do it.

  74. Be The Match says:

    Be The Match is grateful to registry members of any age who continue to share a passion for our mission. We are listening to your feedback and would appreciate your ongoing support.

    At the heart of our mission are the patients with the blood cancers and genetic disorders whose only hope for a cure might be a marrow transplant. This passion to help patients is at the core of all business decisions. The decision to ask for financial support from new registry members to tissue type those over 44 when they join the registry was a difficult one. People of all ages are ready and willing to help save a life – as so many of you have shown in your recent comments. But as a nonprofit organization, we need to use our limited financial resources in a way that allows us to help the most patients by delivering the highest number of successful transplants.

    We encourage all registry members to stay committed to being a potential donor until your 61st birthday. Every registry member is important. Many factors are considered when doctors choose donors for a patient – always with the very best possible transplant outcome in mind. Regardless of age, you could be the one to save a life.

    Thank you.

    • Hank says:

      Thank you for responding, even though IMO it is kinda sad that you had to. I fully support this decision and the announcement you made, and I think those on this thread who are looking at this rationally instead of emotionally understand the reasons for the decision as well.

      I sincerely hope that you stay the course on this decision rather than succumb to public pressure to change this policy. Sadly in this age of twitter, facebook and anonymous comments several other charities have recently come under fire and buckled, to the detriment of those they serve.

      I’m reminded of the vaccine for Lyme Disease, LYMErix. GSK pulled the vaccine from the market, not because it wasn’t effective or because of any real scientifically proven side effects, but because of public PERCEPTIONS of potential side effects. I live in a township with one of the highest rates of infection in the country, and every time my daughter plays outside I pray that she’ll be ok and wish that GSK didn’t succumb to panic. i wish that people would have made a better attempt to understand the facts instead of trying to assign blame. Countless folks could have been spared from sickness, long-term side effects and even death had logic and cooler heads prevailed. I hope that is the case with BTM regarding this decision.

  75. Cynthia says:

    While it may be true if there are multiple matches in the system for one patient, the younger donor will be picked, there are many matches where there are not multiple matches for a doctor to choose from and MANY of these are people over 44. We have seen all the reasons and debates in prior responses for the Be a Match decision. The bottom line right or wrong is that this new practice is discriminatory and should not be legally aloud. If the program cannot afford for people not to donate, then everyone should be asked to donate. Could it be that the younger population are less likely to donate even when they can afford to donate(statistically proven)and this is why they will be charging the older population,just a thought. My mother died at 54 from breast cancer and I am all for doing everything in our power to help the sick, but this is just wrong.

    • Hank says:

      Cynthia,

      This is no more discriminatory than my 4 year old getting free admission to a Halloween Adventure yesterday. The farm chose to offer that incentive to entice my entire family to visit the attraction. By the way, four was the cut-off for the free admission, so the family behind us with 5 year old twins had to pay for both of them, albeit reduced price admission.

      Or how about a restaurant that offers a senior citizen a discount, even though they ordered the same meal that I ordered. Maybe the restaurant is altruistically doing this as a social service for those on fixed incomes, or maybe it is purely a marketing ploy to attract an audience who dines at an earlier time, thereby increasing their sales. Either way someone from one age group is paying less than another.

      So BTM is not discriminating against you or me. They are simply waiving the fee to attract the client base that will potentially do the most good for those who need it.

  76. Brad says:

    As a follow-up to my OP. I’m still hoping someone want’s my old marrow. I made it thru the first round once, but was not called for the second. I just think it was handled wrong. I’ll still give as long as someone wants it. Yea, kidney too, and when this old body finally calls it quits, they can use whatever is still working…

  77. Tom says:

    We do understand that testing for someone who has a potential of being available for 36 years (25-61) is a better deal then someone 45-61 (16 years)

    The defacto age is an issue, the free for some.

    I understand why, I understand that marrow has a limited use and as you get older, the marrow is lessened. I have done the research and even studied my HLA types using my donor info and the Alpha.v3-hla charts.

    In these tough financial times for all charitable groups, I would be cautious of falling into the MDA fiasco.

    Older people on the posts, I dislike the cutoff rather then perhaps a sliding scale.. but it is what someone decided for good or ill. Please keep yourself available.

    At 46 I found no deeper of a meaning then in knowing I was the one person who could give hope to another and remembered why I put myself on the list, Because a 4 year old needed people at a drive and if it was my child, what would I do.

    No matter what the bean counters rationalize.. you matter.. even in year 60,you could be life for someone facing a horrible drawn out passing.

  78. Tom says:

    It would make sense for you to publish the salaries of the top 50 paid of the registry. Then we could decide on our own, if we should support paying the $100 or if the leadership is making enough money to take out of their salaries.

  79. debbie knoll says:

    I’m 50 years old, and I guess I feel unwanted and insulted. What if just one person, in the older age bracket, who would have been a perfect match for someone, declined to join because they could’t afford the $100. I’ve always felt proud to be a potential donor, but now I feel like a second class citizen. What if the idiot who made this decision was the one needing the bone marrow transplant? Think about that for a minute.

  80. Aaron says:

    I’m completely appalled by your disregard for people over the age of 44. I wonder who in your organization has insisted on maintaining this offensive policy that alienates potential allies. Shame on you for this discriminatory policy.

    • admin says:

      Hi Aaron,

      We’re sorry to hear about your frustration regarding the age limit policy we have on the registry. Doctors believe that patients have the highest chance for success when they find a young matching donor. People between the ages of 18 and 44 are selected as a donor by physicians over 90% of the time.

      Those between the ages of 45 and 60 who want to join Be The Match Registry® are welcome to do so, but must join through our online registration process here: https://join.bethematch.org/.

      Our best wishes,

      Be The Match

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