Sometimes, There’s a Match.

Meenu Bedi is saving a life she’s never met…

The posts about Vinay and Sameer make it worthwhile to highlight and remind people that there *are* success stories out there. As many nonprofit volunteers can tell you, the single best cure for donor fatigue is a tangible example. For Vinay & Sameer, our local SF press highlighted this very recent one

Bedi said she was “honored and ecstatic” when she found out her stem cells were a match.

“It was a privilege to do it for someone,” she said. “I would hope that they would do the same for me, if I was in their shoes.”

…”I know she’s 54 years old and that she has leukemia,” Bedi said. “They won’t release her ethnicity, but, yeah, she’s East Indian.”

Meenu was registered via a Team-in-Training program sponsored by the Leukemia and Lymphoma Society.

As rare as matches are, what’s even more sad is the occasional response to a match (a problem which, sadly, Vinay appears to have run into) –

“We often get a lot of people to sign up,” [Program Director] Vlume said, “but the unique problem is getting people to say ‘yes’ after we’ve made a match.”

She said that sometimes, as many as 70 percent of people deemed matches decline to go through with the process.

“They want to look like they’re doing a good thing, they want to show they support the community, but in the end they never really wanted to do it in the first place,” Vlume said.

Sometimes, attitudes are a far worse problem than numbers. Good luck Vinay & Sameer.

12 thoughts on “Sometimes, There’s a Match.

  1. Well, I should point out that sometimes people do not go through with marrow donation for very good reasons. But yeah, 70%! That’s kind of ridiculous. That’s a sizeable chunk of people who are trying for the appearance of doing good, and when confronted with the reality of sacrifice, chickening out.

    And then washing their hands of it, no doubt. Ugh.

  2. I don’t know if I would condemn ppl for registering only for show. I imagine that for lots of people registering seems easy enough so they figure they might as well do it even if they haven’t yet made up their mind, or worked up the courage, for an actual donation. It’s also part of the angle that donor registry drives use to get people to sign up: registering is effortless and it’s the first step to potentially saving a life. Not everyone makes it beyond the frst step, regardless of their intentions.

  3. i think the bottom line is getting the word out.. and getting the community to be more aware.. this is a fantastic article vinod.. thank you for sharing..

    it just takes that one match to save a life..

    crossing fingers tightly. and praying.

  4. “That’s a sizeable chunk of people who are trying for the appearance of doing good, and when confronted with the reality of sacrifice, chickening out.”

    From my experience through signing up to be a donor and looking at the process — this is mainly BS. I found a lot of things that made it a pain to follow through.

    • It takes years to get a call (if ever) and the call does not say you are a match, just a possible match. You do not get the sense of having made a difference the way you do in a blood drive.
    • The system is opaque,you do not get to know if the person you signed up for was tested in time with your sample.
    • The place where one volunteers is often nowhere close to where one is at the time of the call.
    • I could not make an appointment for during the weekend because they did not take appointments at the time (and I do not get any paid days off)
    • I needed to get a medical screening which was not provided for free at a place close to me (and I do not have insurance)
    • Ultimately what killed it for me was that – I kept leaving voicemails in the center which contacted me, but did not get any replies (it takes two to tango and when your partner is a faceless, slothful, bureaucracy, you lose interest)
    • I am still expressed to be in the registry and sent in the paperwork, although I have no idea what the center did with it.

    When I put myself into the system, I was motivated to help someone I could put a face to. Unfortunately, I never got to know if I was even screened for a match. It is difficult to get motivated to go through a lot of effort to help a John Doe who you have no connection with. (Please spare me the nonsense that all humans are connected — if that were so, you should be serving in Darfur right now, saving lives, instead of surfing the net.) Frankly I make a more valuable contribution, by donating plasma every 4 months and by sending money to my pet causes than by staying in the registry.

    At the end of the day volunteers are made to sacrifice quite a bit while everyone else in the system — the doctors,the nurses, the layers of clerks in the medical system, the hospitals, the so called not for profit organizations (Not for profit!= no decent salary) makes out like bandits. It is difficult to come away from it without getting the feeling that you were being suckered. 70% does not indicate that people are callous, 70% indicates that people are unable to look at a broken system critically and demand changes to it. (off the top of my head, I can think of half a dozen things that can be done to improve it– from more intereaction, regular correspendance, treating it like jury duty legally, etc) The system has to have more incentives and should far ,far, far, more responsive than what it is now for it to work.

  5. It’s unfortunate that no government (that I’m aware of) has yet devised a workable market solution for this problem. How to incentivize organ, marrow, and other donations without also encouraging organ theft, forcible “donation”, and at worst, murder? There’s got to be a way to devise such a program – until we do, there will continue to be a woeful under-supply of such products relative to demand, and that’s a tragedy.

  6. Why cant I sell my organs? i mean…they are MY organs. Whast the use of “owning” something you cant sell.

  7. No government can afford to get a market solution for organ donation as it would mean reexamining too many holy cows: 1) Life is not priceless 2) Money will determine your health 3) No government can afford to provide everyone the best possible heathcare 4) We not have a way on how much our body belongs to us and how much it belongs to the government?

    Some of the most contraversial topics in recent years have been related issues — stem cell research, human cloning, abortion issues, when to pull the plug. Most politicians know that if they tackle any of this issues, they will loose a lot of votes, even if the majority feels their decision was correct. In an atmosphere where even giving away condoms is contraversial, do you see any govenment pushing for a market solution for organ donation?

  8. Here are some things a government can do to encourage organ donation, without getting into the monetary aspects 1) Make organ donation the default situation in case of death (currently you have to register to say you are willing to donate your organs at death, instead we the government should mde it so that you have to register if you do not want your organs to be donated) 2) Ensure that anyone who donates will be given preference on a organ donation list 3) Ensure that the donor if provided insurance for heathcare for any complications that may occur as a result of donation. 4) This insurance should be provided by the beneficiary (or someone in place of the benificiary) 5) Ensure that donating will be a factor in reducing the insunace premium paid. (Or more importantly insurance companies should not be able to raise rates/ deny insurance based on a donor’s prior donation) 6) Ensure that donors can apply for short term disability for the time for donation. 7) Organs of criminals on death row should be harvested as a way to pay back society for their crimes (one of Larry Niven’s favorite ideas) 8) Set up a comprehensive national database to keep track of donations and to prevent fraud and abuse. 9) Make the donation of two limbs a necessary requirement for legal immigration (I want to see if people will realy give up an arm and a leg for a greencard :-) )

  9. One way to increase the number of people “deemed matches” to go to the final step and be a doner, is by asking within your circle who got a match? If some one say yes..then we could motivate the person to do the right thing and BE A DONER. What other ideas do you’all have to change this situation?

  10. Everytime a family requests a donation for its loved one, I hope they realize that they need to do the same thing for others in the future and that they resolve to do so. Not only for that particular cause (marrow/organ), but for all other such donations.

    Ideally, all families should do that, but if at least the affected families realize and make this resolution, that would be a huge increase in numbers (and sufficient). However, I don’t have much hopes of this.