Birds In Spring: Stem Cells For Sale
Pssst…wanna buy some stem cells?
It seems there’s nothing to stop you now, you know.
It used to be that compensating individuals for donating peripheral blood stem cells (PBSCs) was a crime, a felony actually. Up to five years in a federal prison. For anyone involved in a PBSC donation for which compensation or some type of payment had been made. This included the recipient of the “illegally” gotten stem cells.
There’s been a battle raging for many years over the inclusion of PBSCs under the terms of the National Organ Transplant Act, and it finally hit the courts three years ago when MoreMarrowDonors.org and the Institute for Justice and others challenged the determination.
First, they lost.
Then, on appeal, they won.
The U.S. Attorney General asked for a re-hearing.
The federal Ninth Circuit Court of Appeals said, sorry, but no.
Finally, this past April in what was pretty much a little-noticed about-face, Attorney General Eric Holder, without comment, said there’d be no appeal to the U.S. Supreme Court.
What this means is that people who donate stem cells can indeed be paid.
As a result of this litigation, donation of PBSCs is now an exception to the Transplant Act.
The exclusion, by the way, doesn’t include traditional bone marrow donations – the one where they stick a needle in your hip and suck out marrow directly from the bone. PBSCs have replaced the traditional method to a great extent with as much as 75 percent of transplants being done with stem cells.
Call me an idealist maybe, but I’ve always thought that people who donate some piece of their body are doing it out of the goodness of their hearts, not for the betterment of their wallets.
But that’s just me.
There’s a slew of folks, apparently, who don’t feel like I do. I’m not saying they’re right or wrong.
So, is this just a cynical reaction to the realities of today’s health care, or is it a groundbreaking move that will mean more donors, more potential matches, and, presumably, more multiple myeloma survivors?
Keep in mind that any invasive procedure, no matter how otherwise routine it may be, carries some level of increased risk – no matter how small. That includes harvesting of PBSCs.
When it comes to getting compensation for stem cell donation, is it greed, or is it a just compensation for the inconvenience and maybe a tiny bit of risk?
The argument of the plaintiffs was that it was wrong in the first place to regard regenerative stem cells the same way that irreplaceable organs are treated.
Shaka Mitchell, president and founding member of MoreMarrowDonors, said in a statement after the Attorney General’s acquiescence that the decision is going to expand options beyond the existing match system, which she called “woefully inadequate.” As many as 1,000 people in the United States die each year because they can’t find a match, she claimed.
MoreMarrowDonors plans a pilot program that would give donors a $3,000 scholarship, a housing allowance, or a gift to the charity of their choice.
Speaking for the losing side, Michael Boo, chief strategy officer for the National Marrow Donor Program, said in a statement that the exception represents a “misguided view” that there will be a salutary impact on the donation of PBSCs. A disappointed Blood Marrow Donor Program says that “compensation will limit treatment options for patients, decrease the quality of donations, and divert much-needed money from areas where it can help a wider range of patients.”
As for me, I’m still stuck on the whole idea that a certain portion of our population needs to be compensated in order to lure them into donorhood.
I worry about the underlying belief that “money talks.”
There are those who don’t think that voluntary donations are adequate any more and believe that financial incentives are the way to go to expand the stem cell donor base.
I wonder, though, how this works now.
By being exempted from the Transplant Act, are PBSCs now on the open market?
MoreMarrowDonors’ pilot plan is a reasonable one, it seems to me, but is there anything to stop someone now from setting up shop and putting PBSCs up for sale? And how are they paid for? Insurance? Out-of-pocket?
The cost of staying alive with myeloma is already daunting.
I rationalize my concern over this financial reward system by reflecting about those who might be unable to find a good match among the 18.5 million or so donors on the domestic and international registries. There are 9.5 million voluntary donors on the National Blood Marrow Donor Program’s Match Registry.
Why shouldn’t those without a good match in the traditional registry system be allowed to go out into the marketplace where some kind of monetary incentive might find them the right match?
If I put myself in their shoes, I’d say, “Damn straight, give me every option there is.”
Most people don’t get a familial match and are forced to go out to the national registry.
I guess I come down on the side of survival.
Although compensating people for donations just seems to be so cynical a view of what we think of people’s motivation nowadays.
Is this what we’ve come to?
Lou Ganim is a multiple myeloma patient and columnist at The Myeloma Beacon.
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Incredibly well said, Lou! I'd always thought( obviously naively!)that the shortage of donors was due to "lack of awareness" of the desparate need for marrow/stem cells/plasma. I've been a regular blood donor for years but registered to become a marrow/stem cell donor only after my mother was diagnosed with MM and I discovered the extreme limitation of suitable donors for this and many other conditions. For me, it would be and amazing blessing and honor to be able to donate something that could literally save a life!! I cannot imagine any greater reward.
I sincerely hope that "monetary compensation" being the most effective means of motivating us to help our fellow man is NOT what we've come to!!!
Thank you for your insight and prayers for your health and healing,
Lisa B.
Great article, raising my awareness of the issue. Prior to reading this, my awareness was "nil."
The one comment I have is that if the "scholarship" is only $3,000, I can't see how it would be incredible greed motivating a person. Hopefully, it would compensate for lost wages, inconvenience, travel.
And I sure hope the medical establishment wouldn't take stem cells from indigent, addicted people looking to score some drugs with the $3K.
I remember at Roswell Park years ago, college students would be paid for plasmapheresis.
If this can save some lives, maybe it has its positives.
I always think there will be generous souls who will donate out of a sense of empathy and fellow-feeling. Maybe just not enough of them!
I was unaware that there was an option of donation of stem cells. I have several co-workers and friends who were anxious to do something to help in my fight, and not that I am in remission, they still ask if they can aid in some way. Now I can have them try to get set up to donate stem cells. I see my Oncologist every month when I go in for the Zometia. So this way I can ask him if it is feasible to have my friends get tested for donation. This sounds perfect. I remember my harvest very well. I had two sessions for harvest and they had to use several drugs to get my stems to release from the marrow. I really did not have a hard time. But I will mention it to my co-workers and see if they are still interested in donation.
Hi Lisa and Cathleen -- I think this is a hard issue to stake an opinion on, because both sides have good arguments. Let's just hope that this all plays out in a fair way.
Mary -- The donation of stem cells adds to the options on the registry. Here's a link to the National Bone Marrow Donor Program where you can get more information: http://marrow.org/Registry_Members/Donation/Donation_FAQs.aspx
Lou,
This is such an interesting topic and you did a great job writing about it. I used an unrelated donor from the Registry for my allo. People that donate are indeed special people. It is great to know that there are people in the world that would sacrifice for a total stranger. I have no problem with someone being paid. I know from first hand experience that quality of life is far superior for us that are fortunate to have skilled allo Doctors and donors. It is because of my Donor that I do not have to keep putting drugs like Revlimid, Velcade, carfilzomib, DEX, etc into my body. Also, those drugs cannot cure a patient, but the donor stem cells can. The donor stem cells are far more valuable to me than any of those drugs.
I see that Robin Roberts is a patient of Dr. Giralts. I believe you have mentioned in the past that he is your Doctor. Must be comforting for you to know that a well known star has the same Doctor you do. He is very well respected in the allo. If I would have traveled to another Center to be treated, it would have been to Dr. Giralt. Sloan Kettering has had great success with allo transplants.
Mark
Hi Mark -- Thanks. I am in awe of you and others who go the allo route. When it's successfully executed, as in your case, it must be a spectacular feeling. As you said, no more of those constant drugs and their infernal side effects. Not to mention the excellent chance for long-term survival. And it all starts with some stranger deciding to donate his/her stem cells. How cool is that? I'm quoting Spock again -- Live long and prosper Mark!
Hi Lou, I think that in a way more important than a payment of about $3K, is the fact that if there were any medical complications related to the donation of stem cells, there is insurance coverage for that from the US Nat'l Bone Marrow Registry (it is stated in the FAQ's). That could reassure a lot of potential donors that they would have medical attention for any related issues. Other than that, most donors would be very glad to know that they had saved someone's life who had a blood cancer! In Canada we have a similar system, called 'One Match'.
Hi Nancy -- Thanks for the information. I took a quick look at One Match, and I see that it, like the U.S. registry is collecting cord blood stem cells. I haven't seen any research on the effectiveness cord blood stem cells and myeloma. I did note though that there are several private companies in the U.S. that will bank your baby's cord blood stem cells for the child's use later in life, if needed.
Hi Lou, I went into the Canadian Blood Services site and found that there are TWO programs called 'One Match'. One is for cord blood cells as you mentioned, and the other is for stem cell collection, either by apheresis or by bone marrow transplant. The stem cells collected from eligible donors are used in treatments for cancers such as myeloma, lymphoma, and leukemia. They can also be uesd to treat Bone marrow deficiency diseases such as thalassemia or sickle cell disease, as well as aplastic anemia, and other immune or metabolic disorders.
SOME expenses are compensated for donors, such as travel expense, but not much else.
What I found interesting also from the point of view of all the Beacon readers, who live in different countries, is that there are at least 11 million donors in more than 50 countries. All of these countries share their information, and so one could receive stem cells from a donor in another country from one's own.
Also, the chances of finding a compatible donor in one's own family is less than 30%. However, that sort of testing, within a family, is not done by One Match, but by the transplant doctors.
Thanks for writing this column...I learned a lot from it!