Saturday, January 9, 2010

Should bone marrow donors be compensated?

I've been thinking about an Op-Ed piece in Thursday's New York Times supporting some kind of compensation for bone marrow donors. The writer takes issue with the structure of a 1984 law making it illegal to sell kidneys, because the organ is irreplaceable and a market in kidneys could spur donors to make a choice that could damage his or her own health.

The law excludes blood and sperm, which replenish themselves, but not bone marrow, which does the same. The writer of the Op Ed piece, a lawyer, has filed a constitutional challenge against the marrow prohibition, seeking to allow some small compensation for donors.

The hope is to get more to donate; according to the piece, "Only 7 in 10 Caucasian patients who need a donor find one. For African-Americans, the odds are longer still; only one in four do. Tens of thousands of Americans have died for lack of a donor."

The compensation includes a $3,000 scholarship or a donation to a favorite charity. I don't think it's money that compels these generous souls to donate; however, this isn't as direct as straight cash, so maybe they'd like it.


I haven't had any news recently, which I guess is good. It's been gray, cold and windy. I continue to walk the dog each day on the icy path. I know I should go early before it gets colder, but I procrastinate until afternoon because I don't feel like going out. Meryl and Deb have each rescued me. I walk a little and then I walk to their house, where I get warmed up with hot chocolate or coffee and cookies. Then they drive me home. Barry also came over one day and Mary another; we walked and then had something to eat. Good conversation, good friends and of course good coffee and cookies warmed me right up.

I've kind of been hibernating, which is the case for many in this area, except they have to go to work and I don't have the distraction, although you'd never know how busy you can get filling up the day. I'm going to try to come up with a few more things to do. Also, at almost a year "out," I can soon converse with my donor by name. We've been in touch through censored mail, but we can exchange names and I guess pictures after a year, which is Jan. 31. Wow. That should be interesting!


susiegb said...

oh Ronni - I just can't come at that sort of thing at all! I can't even believe that people get paid to donate blood! All you get when you donate blood in Australia (and the UK) is a cup of tea and biscuit! Of course I can't donate blood anyway ... not sure if having had lymphoma would impact on it but I have 2 'things' that stop me being able to: firstly I had hepatitis (A) many years ago, and secondly, even though I'm a vegetarian the fact that I lived in the UK during part of the mad cow disease time means I can't ... :) (I do go off on tangents when I'm writing comments, don't I!!)

Naqvee said...

hi there, I'm studying law in India and I have read about "this" important aspect which is often neglected by the Medical councils. yes, donors must be compensated, whatever the petty amount is but it should be given, so to raise awareness as well as encourage people to come and donate.

and we too are under this winter balloon. take care of yourself! You are precious for many!

PJ said...

Thanks for pointing out that article. Compensation of some sort would be an incentive to get more potential donors to at least register, increasing the odds of a match. Not all employers will allow time off with pay for an employee to donate, a process that takes several days. Depending strictly on altruism is heartwarming but compensation might save lives. I guess the next question is, who'd pay for it?

Glad to hear you're doing well. At least you get out with your dog every day. I struggle to keep warm inside, so going out for a walk isn't something I'm motivated to do.

Susan C said...

As PJ pointed out the big question is "Who would pay." With sperm donation, the cost is passed on to the recipient.

And is the writer suggesting that the donor receive an incentive for swabbing their cheeks and joining the registry or for actually donating bone marrow/stem cells?

How nice to reward yourself with coffee/hot chocolate and a treat!

Nelle said...

When we were looking for a match for my son I was shocked when my brother wouldn't allow his children to be tested. My sister was a possibility of a match but we didn't do further testing as it was so costly and then they felt he wouldn't need a transplant. I think donors should be compensated. I saw so many children who never found a match OR used someone who wasn't a good match but just felt it was better to take the chance. Jan. 31st is my sister's 50th birthday. I guess that is a rebirth day of sorts for you. Congratulations. I hope that you will find a wonderful relationship with your donor.

Ronni Gordon said...

I think it's for actually donating cells. Who would pay, now that's an interesting question. It would provide another layer of financial hurdles because transplant centers wouldn't want to raise that money. Maybe the lawyer who is challenging the law wants to set up a system for attracting grants or other awards. Maybe he hasn't even thought about it!

Marilyn said...

Thanks for pointing out the NYT Op-Ed piece. I'd somehow missed it. Looking forward to reading about what it's like to meet or at least have more direct contact with your donor, though my husband's donor will be his brother, already known to us.

Melissa said...

Hi. I just found your blog and am so thankful. I am beginning the process of a bone marrow transplant and it looks like it will be at Dana-Farber. I have an appointment with Dr. Alyea. I am so nervous and scared to begin this process. I do not have cancer, but a primary immune deficiency. Usually bone marrow transplants aren't done for this except in pediatric patients. I'm 26, so obviously not a pediatric patient. I was wondering if you would mind conversing with me, maybe by email if you're willing. If not, I understand. I am just so scared and afraid that I am going to be doing this all alone. How is Dr. Alyea? Is he a good doctor? Anything that you're willing to share is greatly appreciated. Again, as I said, I am so thankful that I have found you.


Ronni Gordon said...

Dear Melissa,

Dr. Alyea is a wonderful doctor, and very nice, too. They work as a team, which gives you extra confidence that you have the advantage of having some of the best doctors in the world all sharing opinions about you. Plus you will have a social worker and nurses to talk to. You will definitely not be alone. You can also ask about getting assigned a volunteer from the One-to-One program. This is a person who's been in a similar situation who will talk to you. Getting the transplant itself is no big deal. It's just like getting a bag of blood. It drips right in and then you're done. I don't know if you're having chemo or radiation. That will determine what the whole experience is like.