9 replies to this topic

[VickiW]

Morning everyone!

ran across this article in my Sunday paper.There has been a lawsuit filed in California challenging the government's 1984 law banning organ sales.  Specifically the part that catagorizes bone marrow and it's subparts as vital organs like kidneys and livers.  They want to strike the law down completely or at least allow the promise of $3000 in scholarships or housing payments to donors as an inducement to draw new donors to the national marrow donor program.  They state that if marrow cells were treated like blood or other regenerative fluids that are legal to sell, more donors would be induced to register and more lives would be saved.  The article goes on to say how most marrow now collected is not done in a surgical procedure (asperation) but by aspheresis which requires a few daily injections in advance to stimulate marrow production,  but then amounts to sitting in a chair reading a paper or watching TV just like a blood donation.

This suit was filed by several individuals -one who lost his son while waiting for a bone marrow match, a mom of 3 daughters in need of transplant, a Minnesota physician and a California foundation proposing the payment incentive.  I could not find a link to the specific article (In the Wisconsin State Journal but written by Carol Williams from the Los Angeles Times) but when I googled "should donors be allowed to sell their bone marrow", the title of the article, other articles popped up.

Let me know what you think of this---good idea? bad?  Just some Sunday food for thought.

Vicki

[Tex]

I don't post on this forum but this idea is complete BS.

[jamielynn]

I think what needs to happen is awareness education.

Before my partner got sick, it honestly never occurred to me that I COULD donate anything besides blood if I am alive. I mean I am an organ donor if I pass away, but I didn't know or think about other donation abilities as a person living. I never had to think about it, and it wasn't something that was publicized like Susan G Komen and breast cancer awareness are. I think that cancers overall need to have better publicity, prevention, awareness, donation needs all of it. Treatment for leukemia is one of the longest and toughest and people aren't aware of that until they or someone they know gets it. People all the time are shocked that Maria's treatment will take 2.5 years to complete and then they tell us their story of Jane Doe who had such and such a cancer and just had to take a couple radiation pills and was done in a month or two, etc. So awareness needs to be built in my opinion. Leukemias and blood cancers are so complicated and affect too many lives, especially children and seniors. But we are lucky considering how "small" the community is, that such great efforts and advances for research are being made.

As far as should donors be allowed to sell their marrow.... I mean it would be nice to think that once people are made aware, they would just WANT to do it. And not for money, but sadly that isn't always the case and if it came down to ONE person in the world being a match for my partner, and he would not donate unless he got paid, I would do whatever it took to meet his request and get his donation. People get paid for donating plasma. Not a lot of money but they do get paid...

[PhilB]

I'll just add that on this side of the pond we find the idea that people on your side get paid even for donating blood extremely freaky.  I agree that education has to be the way to go.

[VickiW]

Hi Phil-

I do agree with you that people on this side of the pond getting paid for what should be a charitable act is a bit "freaky" that is why the 1984 law was passed preventing payment for organ donations.  It was to keep the desperate and/or unscrupulous from taking advantage of those who were poor enough or otherwise handicapped from being taken advantage of for money.  Unfortunately, over here organ transplantation is a very big money business and someone is always figuring a way around the law.   I don't know how they managed to exclude blood from the law but I am sure it had to do with a strong medical commercial lobby.

I also agree that education is the way to go with a caveat.  I see nothing wrong with a donor being reimbursed for any expenses incurred such as travel, time off work, etc. for donating.  The rational, according to the article, for offering a payment is to encourage minorities (especially asians) and African Americans to become donors as they are the areas where there is the biggest need and smallest donation base.  The other argument they used was the fact that many people are reluctant to donate if it is not a family neighbor or someone else they have a personal connection with.  I think this is where education would be of the most value, getting the word out there that it no longer requires a surgical procedure.

I am afraid, like many here, I have a personal stake in this,  I have already failed on one drug and tho I am doing great at the moment (PCRU just reached after 4 years, yea!), should it come to a transplant, I have no siblings or any other living relatives that I know of so the odds of my eventually being dependent upon the kindness of a total stranger for my survival is very real.

[gunner]

I don't see a problem with it.

Everybody else in the business gets paid for their piece of the game. The drugs are very expensive, the tests are expensive, and the doctoring is expensive. In general, few people have a problem with paying (or rather with your insurance company paying) all of those bills. Why should a donor be treated any different?

Our world is a better place because of people who volunteer their time, and people who donate blood. And for those who would be willing to donate marrow, that is great. $3000 is not extortion in the economics of our illness.

[VickiW]

I agree with you Gunner.  The potential need, maybe, sometime in the future, for this "old lady" is one thing, but what about that Mom with 3 DAUGHTERS that all need bone marrow transplants and can't locate a matching donor?  There is some genetic abnormality that happens almost always only to asians that can only be helped with a BMT.  What's wrong with doing whatever could get them help?  What about the parents on their knees at a bedside at St Jude's?  Is $3000 +costs too much?  That transplant specialist in Minnesota who is willing to put his own name on this bill because he is tired of (in his own words) being forced to either break the law or watch his patients die.

Personally, I say do whatever we can to educate the general public about the need for donors and the new procedures and leave the morality of the issue on the shoulders of the person who accepts the money and allow these people whatever means they need to save their loved ones.

Ok, dragging off my soapbox now.

[CallMeLucky]

For the most part I agree.  I think incentives often call people to action.  But that being said there are some potential factors to consider.  Although in the case of a marrow donor who could realistically donate to more than one person, where a kidney donor for instance could only do it once, some of these issues are not as relevant.

If you allow people to pay for donors you could have some potentially negative effects.

First being, what if the patient can't afford to pay the donor?  I recognize that there may be organizations that are willing to help and it still provides the patient another opportunity, but by the same token it could take an otherwise willing donor and make them think twice if they are not going to get paid.  I know that would be a terrible person but it could happen.  You also could run the risk of the donor wanting to renegotiate the payment amount, basically holding the patient and their family hostage for more money.  You also have a situation where a donor could be a match for multiple people, so who gets the transplant?  The person with more money to pay?

I think most of this could be rememdied by establishing a set of rules that govern how people can do this, including a predefined amount, an intermediate party to handle the arrangements etc.  But it certainly opens up the door to more legalities.  What happens if the donor changes there mind after signing the contract, etc?

Again I think most of it can be worked out and most people who are in that situation would be willing to pay.

Overall I think it could be helpful to get some more people to register but you have to ask yourself, if you were the donor, would you ever except the money?  I couldn't.

[SunNsand]

Wow, that is some food for thought. That's a though one. If my child needed a transplant, I would do just about anything, even trade a kidney for marrow if I thought it would save my childs life. I can also understand the concern for someone donating marrow to the highest bidder, ick ... what a thought. Although, I think people are already going to other countries to purchase kidneys, etc. I've even read stories where some countries were forcing vulnerable sections of their population to donate against their will, some were even left to die after the surgery. PhilB mentioned we get money for blood over here on this side of the pond. Up until a few yrs. ago, I used to be a regular blood donor until they started rejecting me because of low rbc's. I was never paid for my blood donations and I haven't heard of anyone ever getting paid, but maybe that's just my local area. I would freely give blood/marrow to anyone that needed it ... if I still could. I do agree that we need to start getting more attention and educating the public on marrow donation.  I talk to people about marrow donations. My entire family registered when there was a bone marrow drive for two local sisters (both teens) that needed transplants. Sadly one recently passed. My husband is a long distance road bicyclist and he put LLS.ORG on his bike. People ask him all the time what it means and that gives him a chance to educate.  Well I am rambling so I will stop. I am doing the "up at 2:00 a.m." post and probably making no sense. That is an interesting subject, I will be asking my friends and family. I am curious as to the responses I will get.

SunNsand

[cherylannes]

This is an interesting ethical quesiton obviously.  The biggest worry is that it starts us all down the path of using people as a means to an end, when people are an end in themselves.  This is why I am in disagreement with selling body organs, and I think paying people to donate blood is wrong as well.

I agree with everyone here, education is key, I think when people find out how relatively simple it is to donate bone marrow they would do it.  When it comes to cord blood, we should all be appaled that every day there are thousands of placentas thrown away.  The blood from these could save so many lives.  I think pregnant women should be given the opportunity to donate their babies cord blood.  I think that if a women wants to do this, we should find away to take the financial burden off of the consenting parents.

As for getting to the minorities, I think there needs to be outreach programs into the communities with educational programs specifically designed to the individual minority groups.  I think in this case a raffle of some sort would be a good incentive, after educating them about the way the procedure is changed and how relatively simple it is, and like Lucky suggests, some sort of scholarship award or something could be raffled off.

Additionally, you have to consider that sometimes donors need to be contacted much later after transplant to provide donor lymphocyte cells (DLI), if the patient starts to show signs of relapse.  So, I do not think a person should be a frequent bone marrow donor for this reason.  Another consideration is that the donor has to take neupogen to stimulate their cell growth, I am not sure if the risks of being a multiple donor have been studied.  What if someone was a multiple donor, and this somehow made the donor sick, but one of the patients needed access to additional lymphocytes? 

As for the comments on the costs of everything associated with CML, I hear you....This is the problem in health and medicine, we haven't found the balance yet...

This topic reminded me of the book by Jodi Picoult, "My Sisters Keeper", here is a brief synopsis from the website:

A Short Synopsis

Anna is not sick, but she might as well be. By age thirteen, she has undergone countless surgeries, transfusions, and shots so that her older sister, Kate, can somehow fight the leukemia that has plagued her since childhood. The product of preimplantation genetic diagnosis, Anna was conceived as a bone marrow match for Kate - a life and a role that she has never questioned... until now. Like most teenagers, Anna is beginning to question who she truly is. But unlike most teenagers, she has always been defined in terms of her sister - and so Anna makes a decision that for most would be unthinkable... a decision that will tear her family apart and have perhaps fatal consequences for the sister she loves. My Sister's Keeper examines what it means to be a good parent, a good sister, a good person. Is it morally correct to do whatever it takes to save a child's life... even if that means infringing upon the rights of another? Is it worth trying to discover who you really are, if that quest makes you like yourself less?"

If you have seen the movie, but not read the book, then you must read the book as when the movie was made the ending was changed.  Obviously the author took this scenario to an extreme case, but it sure raises lots of questions.

Thanks for bringing this topic up....

Cheers!