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I’m sure some of you have seen the stories on the news: someone in need of an organ uses a web site on the Internet to find a perfect match, and the two live happily ever after.
As a former transplant recipient, and someone who’s currently on the UNOS list, it’s hard to watch these stories without feeling a bit cheated.
What’s the problem, they’re not breaking the rules are they? Are they?
First one needs to understand the transplantation process, and everything involved with finding a living related donor, or waiting for a cadaveric transplant. My first transplant was a living-related transplant, and while I’m certainly no doctor, I’d like to think I understand a little something about the process and how it works. Having lost this organ, I also understand the emotional stress that’s involved when such a gift expires.
Good Deeds
First off, the fact that there are people willing to donate their organs is great. I need to make perfectly clear that this is a huge deal for both parties. That there are those out there willing to donate not only to a family member or friend, but to anyone who needs it is huge.
That being said, it is extremely important that people are giving such a gift for the right reasons. In my (not so humble) opinion, an organization like matchingdonors.com is NOT capable of undertaking the huge responsibility of appropriately matching donors with recipients.
As a 28 year old who has been on dialysis for the last 3 years, I know how it is to wait for a kidney. As someone who has had a transplant I also know what struggles await on the other side. I am certainly not the only one who has experienced this, but I do have some unique insight on the matter. There is an enormous emotional and psychological attachment that takes place with such a procedure. This is well known, and there is typically a fair amount of psychological evaluation and testing that goes on for both parties prior to transplantation. It’s important to know that the person giving expects nothing in return, and it’s equally important to know that the person receiving is capable of accepting such a gift without strings attached. That’s all fine at the onset, but what happens when the person loses the kidney five years later because of their lifestyle choices? It’s important for that gift to be free and clear.
None of this is new information. But in my opinion a single, private website such as matchingdonors is incapable of guaranteeing this level of screening. Of course the individual hospitals will have to make the final decision, and many are deciding not to accept transplant matchups from this website.
This is where the business end of things kicks in, and the issue can really become complex. A highly rated transplant hospital (like University Hospital in Denver) really wants patients to choose them. They also need a high success rate, to maintain their status. There’s HUGE money in this business coming in from private insurance companies, and Medicare/Medicaid. But if a hospital is to remain true to its mission, it has to be concerned about the welfare of my patients in the short term, as well as the long term. This can get very confusing if several websites come online offering the service of matching donors with recipients. Privately run, there is no way to guarantee the sanctity of this gift, and to make sure there indeed aren’t strings attached.
So what’s the answer?
In my opinion matchingdonors is onto the right idea. I applaud them in what they’re trying to do, I just don’t think they’re the right ones to be doing it right now.
The UNOS list already manages the information of all those waiting for kidneys. UNOS should then also monitor those willing to donate them. This should be in conjunction with a board of directors from say, the 10 best transplant teams in the nation (or some other collection of diverse authorities). This would help to insure one centralized place for the matching to take place, would insure the quality of the match, and would possibly reduce some of the testing, or repeat testing involved for both the donor and the recipient.
Furthermore, there should be some sort of incentive for a human to make such a donation to another. But it shouldn’t be in the form of cash. This is one of the obvious problems, or at least concerns with privately run websites offering this service. A person can already go to South America and purchase an organ transplant … we don’t want people selling their organs here.
What about a tax incentive? What about some sort of societal contribution - tax break for people who donate organs?
Again, if this is centrally run I see this being regulated much easier.
The Big Picture
I’m writing all of this off the top of my head, so I apologize if any of it is false, makes no sense, or is otherwise in error. It is important that people choosing to donate do so freely, and with little motivation or pressure to do so from outside.
John’s Hopkins is currently matching donors to recipients, and from what I understand is having good luck with it. If this were done on the national level (and with participation from all the transplant hospitals) the list of ~80,000 people would disappear. Imagine the wait going from 5 years to a couple of months!
Certainly there are areas of the medical industry who stand to profit from such an operation. Transplant teams, pharmaceutical companies (post transplant drugs are ridiculously expensive).
But who will lose out? What about the dialysis companies? This is another huge business that would potentially lose a considerable share of their patients, and medicare-based income.
Would tax payers rather have their money pay for a patient’s transplant and drugs, or dialysis for the next 5 years?
www.usrds.org has tons of data on this and other ESRD related discussions. According to their data, there are roughly 160,000 dialysis patients in the U.S. being paid for by Medicare. This is costing roughly $7,000,000,000 (Just Medicare’s ESRD expenditures, does not include private insurance). This is about $43,000 per year, per patient (and this is a reduced rate… medicare does not pay the "full" price for dialysis). Keep in mind, we’re only looking at the stats as they pertain to patients eligible for transplant (based on age only).
This is a huge cost, and with only a few companies sharing the majority of dialysis clinic ownership, there’s a lot of money to be made.
The patients are the ones who need to speak out. It is their money that is funding this (and the money of other tax payers). If we have to pay, do we want to pay for people to be connected to machines, or out living life? We know that there are plenty of people willing to donate. If a safe, secure way can be found to administer such a service, and connect people, wouldn’t this be the obvious solution? Wouldn’t the tax payers rather see the people benefiting from their dollars returning to the workforce and living healthy lives, rather than wasting away in their dialysis chair? No, not everyone on dialysis is miserable, but a considerable amount are. Considering that dialysis and/or ESRD qualifies you for Supplemental Security Income (SSI), there is actually incentive for some patients to take advantage of the system.
Centralize control of a national donor list, and make the service available for everyone. Find some sort of fair, passive financial incentive (tax break or something similar), and allow the hospitals to apply the same standards to these match-ups that they already are.
In my opinion this will be a much better use of the tax-payer’s money, and will create a higher quality of life for all involved.
Again, my apologies for any of this that is false, or nonsensical. Any data contained herein was found online, and may or may not be accurate. If someone has contrary information, I would invite them to contact me and educate me so that I can form a more accurate picture.
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