Our chief of transplantation, Dr. Doug Hanto, has strong opinions about the ethical issues surrounding solicitation of organs for transplant. He recently set those forth in an article in the New England Journal of Medicine. Here is a summary from the Boston Globe's White Coat Notes.
Dr. Hanto has built a very successful solid organ transplantation program at BIDMC. We are proud of the work he and his colleagues have done. I am also proud that he has chosen to engage directly in these very controversial subjects. I also agree with him. Check it out and see if you do, too.
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28 comments:
A timely news story today discusses South Carolina's state Senate considering offering prison inmates time off for organ donation... food for thought.
As a medical student and future physician, I am glad that you bring up this incredibly important issue. Organ donation is an incredibly volatile subject, but it's a shame that the great majority of Americans never think about it until they or someone very close to them is in need of a transplant. This subject has been brought up multiple times in my medical education, leading to heated discussions with no apparent resolution at the end of the day.
Dr. Hanto's argument is systematic and logically sound, but I still disagree with his ultimate conclusion. Publicity and policy promoting organ transplantation is lacking. All too often, patients die an agonizing and preventable death while hoping to be lucky enough to receive an organ transplant. Though I agree with most of Dr. Hanto's argument, I still feel that patients should be allowed to solicit for organs, because this indeed "creates" new organ donors that would not necessarily be able to donate in the future. As the article stated, there are only around 80 good Samaritan donors a year in the US. What if that number was doubled by solicitation? As long as monetary or other incentive were not involved in the donors reasoning, I feel that this is a just practice. However, the altruism of the offer should be ensured by a third party. Not only does it "create" organs that wouldn't normally be donated, but it more importantly increases awareness of this issue in the public. Hopefully a greater awareness will help doctors save lives in the future.
Oooh, I have a problem with both offering prisoners time off for organ donation (will there be accompanying appropriate counseling regarding the risks associated with donation? Probably not), and private solicitation. As Dr. Hanto's article describes, one liver cancer patient was able to "jump" the waiting list to obtain a liver from a deceased donor by pulling the heartstrings of the deceased's family. He died one year later of recurrent cancer. Is this fair to the person who was at the top of the waiting list?
Parenthetically, Paul's post illustrates one of my pet peeves - only subscribers to NEJM can read the entire cited article, thus the public is deprived of a thoughtful discussion of an issue that is not merely medical, but ethical. I am a physician and NEJM subscriber so I was able to read it, and I don't think the summary does it justice. Somehow this situation has got to change, if we want to engage the public in issues affecting their own or their loved ones' health.
With all his talk of those "at the top of the waiting list," why did Dr. Hanto oppose the 2000 Final Rule, the implementation of the MELD system, and the allocation of livers to patients who are sickest rather than those in the geographic area of the transplant center? His quote in the New York Times (3/27/98) was that "This national sharing plan is not going to bring organs to Cincinnati [his employer at the time]." I can't help but conclude that Dr. Hanto's "ethics" may be based as much on the needs of the transplant center he's affiliated with than the patients he is supposed to serve.
Does BIDMC get passed over by altruistic donors? Does Dr. Hanto want to derail this practice for his patients' sake, or for an interest of his or BIDMC's? It's hard to see how impeding living donors in any way could help anyone involved in transplantation. But then again, I'd think that giving organs regardless of geography would be unopposed by anyone ethical.
In response to anonymous: "only subscribers to NEJM can read the entire cited article, thus the public is deprived..."
There are several efforts to ensure that government-funded research and study (I'm not referring to the cited article specifically, I don't know its funding) is available to the public that paid for it. See Taxpayer Access for more.
Regarding Anon's 1:19 comment:
I almost did not post the comment because of its ad hominem attack on Dr. Hanto's integrity and ethics. I finally decided to include it as an unfortunate example of the kind of thing that is made possible by blogs.
Blogs offer a wonderful opportunity for public exposure of all points of view. The anonymity that is offered provides the chance for people to say controversial things without fear of retribution or impact upon their personal life.
The downside is that anybody can say anything, shielded by that same anonymity, including nasty things about other people.
It is one thing to disagree with Dr. Hanto's published opinions on various issues. It is quite another to accuse him of taking those positions for personal gain or because of an underlying lack of ethics. The former is helpful and thoughtful discourse, something that has been encouraged by many participants on this blog. The latter is just mud-slinging degradation of another person. Dear Anon, you can do better.
I am anon 9:32; in response to jaz; thank you for the information.I was aware that this was happening for government funded research, and I hope it goes through. However, for an article like this that offers no new medical research and addresses important public issues, it would seem the journals should automatically deem it free.
Regarding Paul's dilemma as to anon 1:19's post, it would seem this reader clearly has issues with either the transplantation policies or doctors, or both. Although he/she chose to express himself without courtesy, physicians in general are subject to much more ethical scrutiny and less trust nowadays. Perhaps justice would be served if Dr. Hanto had an opportunity to address the issues anon 1:19 raises. I, for one, do not know what he/she is talking about.
If I am generous enough to donate an organ, why should anyone else decide who it goes to? Why is the person at the top of this list entitled to my organ? I should be able to give it to whomever I want. Your view of what makes somebody number 1 may not be mine, and it's my kidney!
Regarding the medical student’s comment:
I agree with the medical student who expresses frustration that more Americans don’t donate their organs, but disagree with the statement “Publicity and policy promoting organ donation is lacking”. The Department of Health and Human Services (HRSA) launched the Organ Donation Breakthrough Collaborative in 2003 (http://www.organdonationnow.org) which brought together organ donation professionals and hospitals leaders to develop best practice models with a goal to increase organ donation rates in hospitals to 75% . And there is good news! In 2004 there was an unprecedented increase of 10.8% in organ donation and in 2005 organ donation surpassed this increase by an additional 6.2%; 2006 data is expected to surpass 2005. Many hospitals, including BIDMC, have achieved the 75% goal and have received Medals of Honor from the Collaborative. Our effort was a multidisciplinary effort led by our Organ Donation Council. In addition, the success of the Collaborative has led to the initiation of the Organ Transplantation Breakthrough Collaborative in May 2005 that has as a goal to increase the number of organs transplanted per donor to 3.75 or more compared to 3.0 organs per donor in 2004. These efforts have already meant thousands of additional transplants and lives saved. But there is still much to do. There is additional information on other organ donation initiatives at http://www.donatelife.net and http://www.organdonor.gov.
To the medical students’ other point that solicitation “creates” new donors, I would only emphasize that I am all in favor of publicizing the plight of patients awaiting transplantation which can increase public awareness. When donors come forward as a result, I believe that they should donate in a nondirected fashion to the next person on the waiting list as the fairest to all those patients waiting for a transplant. The experience so far is that donors are just as willing to donate whether they can choose the recipient or not, so nothing will be lost by this approach.
Regarding anonymous comment 3/13 at 1:19:
For the record I did not oppose the Final Rule or implementation of the MELD system which allocates livers on a “sickest first” basis. In fact I was a member of the UNOS Liver and Intestinal Organ Transplantation Committee from 1999-2003 (Vice-Chair from 2000-2003) that was involved in the development of the current MELD system and supported its implementation in 2003. What I did oppose (as did many others across the country) was the proposal several years before that advocated a single national list for sharing livers (this is what is referenced in the 1998 NY Times). Computer modeling data at that time clearly showed that this system would result in more deaths after liver transplantation, an increase in retransplant rates, an increase in cold ischemia time and expense due to cross country shipping of livers, and a marked decline in the number of life-years resulting. In fact its supporters were large programs that had much to gain from such a policy even though it was not best for patients overall. I do resent the author’s accusation that I put anything above the interests of patients awaiting transplantation – not just my patients, but all patients. After all, the whole point of the solicitation article is doing what is the fairest to all the patients on the waiting list, not just a select few.
Regarding time off for organ donation:
Time off will not happen because it would violate federal law, specifically the National Organ Transplant Act (NOTA) passed by Congress in 1984 that makes it a federal crime “to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation.” Clearly 180 days off a sentence would constitute “valuable consideration”. Secondly, someone who is incarcerated cannot make a free and informed decision to donate. There is always the risk and possibility of coercion, particularly if there is a reward such as 180 days off a sentence. Remember the features of informed consent include disclosure, understanding, voluntariness, competence, and consent. Many of the arguments used to oppose buying and selling of organs would apply here as well. There is a risk of exploiting prisoners. There is a risk that the prisoner might seek out the recipient after their release for some “additional help since I helped you out” unless the recipient anonymity was protected. Finally, the medical principle of “Do no harm” is violated anytime we do a live donor transplant because we put the donor at risk for morbidity and mortality. The only way we can justify this morally is when the individual donating chooses to accept the “harm’ in order to benefit someone else, not to get time off their sentence, payment, or other valuable consideration, and when there is benefit to the recipient.
To Anonymous at 8:04:
Most of my article is devoted to answering your question below. Please read my arguments carefully and then answer this question. According to your argument you would have to support someone who only wanted to donate to someone of their own race, gender, or religion. Do you think that type of discrimination is fair and should be permitted? The Florida legislature didn’t think so when it banned organ donation to specific groups after the family of a Ku Klux clan sympathizer said his organs could only go to white recipients. UNOS also bans such discrimination. None of us have 100% autonomy to do as we please when it infringes on the rights of others.
As a transplant patient, I fully agree with Dr. Hanto's preservation of organ donation based on patients' medical condition and nothing else. Living donors are definitely giving an incredible gift, and therefore should be given as much latitude as feasible. However, it's a slippery slope--prohibitions against organs only being donated to those of a specific race, gender, or religion are only a start.
Most transplant candidates and recipients aren't perfect--most of us have flaws, quirks, and other things that would make someone less desirable in a profile on a website. I have no idea how I'd "do" through solicitation avenues, and I don't want to know. Allowing anyone (UNOS, transplant centers, or even donors) to judge seriously ill patients on anything other than medical need is a dangerous road to start judging on "social worth."
Dr. Hanto's ethical nature seems to have prompted him to support transplantation of people with disabilities, which is something that sadly can't be taken for granted even 20 years later! I'd hate to think how Cindy Young would have done if she were dependent on a great marketing campaign to get her kidney transplant. I recently wrote a post on the case of Misty Cargill, and wish I had known about Cindy Young and Dr. Hanto's advocacy for her when I wrote it. Thankfully, disabilites like these aren't a problem I've had to face directly, but I do have an interest in a system that is fair to everyone facing end-stage organ failure. As the poem goes: "First they came for..."
I am anonymous 8:04. If I can specify how I give my money -- say that I want it to go to political groups -- surely I have the right to determine where an organ goes. If I respond to a newspaper story and decide to give my kidney to a local teenager, nobody should have the right to tell me that someone else comes first. The two needs are not related. The system tries to make them related. That may be just, but it's not right. And people can be despicable, as in the Florida case, and still have rights.
To anon 8:04;
when I was a kid and wanted to do something like pick a flower in a park, my mom would always say, 'think about what if everyone did that'; e.g. there would be no flowers left in the park. I think the same applies to your narrow argument here about being able to direct where your kidney goes. Expand your thought process to how you would devise an entire country-wide transplant policy using your argument, how people would use your policy, and whether that would be ultimately fair to everyone.
I, for instance, have to think carefully about how I feel about transplanting to patients with disabilities when a more "productive citizen" is 2nd on the waiting list; or transplanting livers to alcoholics who swear they've quit. There are innumerable such conundrums.
The bottom line is that humans are not good at playing God or Solomon, but sometimes we are put in that position. We just have to do the best we can.
Thanks to Dr. Hanto for his comments elucidating the issues raised by anon 1:19. As a retired pathologist, I can independently support his statement that livers do not do well for long time periods outside the body. I am not an expert in this field and Dr. Hanto can certainly correct me, but people should understand that different transplantable organs have vastly different "shelf lives" once removed from the donor, and liver is a very difficult one.
However, Dr. Hanto perhaps inadvertantly raises another issue with his statement ".... In fact its supporters were large programs that had much to gain from such a policy even though it was not best for patients overall." In a way, this is a suggestion that these programs were not being entirely ethical themselves. This does not surprise me as a physician, and I think our profession needs to acknowledge that such competition does occur, unseemly as it may be.
Where I live in the Washington, D.C. area, there was recent publicity about several local transplant programs not meeting survival and/or volume criteria. I would be interested in others' thoughts about whether transplantation of the more difficult organs such as livers should be restricted to high volume centers (as long as they were adequately distributed geographically to meet patient needs), which I suspect can demonstrate better outcomes.
Thank you Manu Varma. It is hard for me to understand how a transplant program could in good conscience deny Misty Cargill an opportunity for a kidney transplant based on the fact that she is mentally retarded and lives in a group home. It is a sad day.
To Anon 8:04
It may be hard to convince you of my argument, but let me try one more time. In fact you can’t give your money to any political group. For example, you can’t give your money to groups that the US government labels as terrorist organizations whether you agree with the government’s assessment or not. You may be able to belong to a group that pursues discriminatory practices (e.g. Ku Klux Klan) because of the rights of free speech and assembly, but even they cannot actually engage in discriminatory activities which violate the law. My point is that donor autonomy has limits, whether we like it or not, because recipients on the waiting for transplants also have rights that bear consideration. And I agree with Anon 7:52 that you could not design a nationwide system that would be fair to all patients in need using your principle of absolute donor autonomy. The current deceased donor system for allocation is based on medical considerations that balance justice and utility and to consider any other basis for allocation opens the door wide for discriminatory practices as I have emphasized in my article.
To Anon 7:05
In the past there was data suggesting that high volume centers had better transplant outcomes (patient and graft survival) than small volume centers. However, recent data suggests that the correlation between volume and outcomes has decreased or disappeared all together. As you know there is probably no area in medicine that collects and publishes as much data, including center specific data, than in transplantation (http://ustransplant.org/ and http://unos.org/ ). That is not to say that all transplant programs have good outcomes. Some programs don’t have good outcomes, but it is not always related to volume. I think it is important to point out, however, that the quality of a program includes more than just patient and graft survival, although these are clearly the most important. Other measures include incidence of infections, rejection, surgical complications, etc. Caring for transplant patients requires a well-trained multidisciplinary team that can be better assembled and maintained in larger centers. The problem is no one can accurately define what volume cutoff there should be. We have some ideas about minimums and maximums, but there is a lot of gray in between. The bottom line is that excellent quality care can exist in small, medium, and large programs and so can poor quality care. It is important for patients, families, and their physicians to be aware of the results of the program at which they are seeking care. And that goes for any procedure, not just transplants. That is one reason why Paul has been out front on the issue of transparency in reporting of hospital quality measures and outcomes. I agree with him 100%.
An afterthought and addition to my prior comments: When programs are too small there are several potential problems. One is that if a program is small and rejects organs that are usable (because of lack of capability) patients on that program’s waiting list are disadvantaged. Smaller programs may be more conservative in who they will transplant because a bad outcome can affect their published statistics more that will then be judged as reflecting poor quality. Other ancillary services necessary for a successful program may not have or gain the necessary experience to care for these complex patients. Volume is still an important component of quality and I may have left the impression it didn’t matter. For example, Medicare has minimum volume requirements for certification for heart and liver transplant programs and recently decertified several programs for low volume and poor outcomes. I think most of us would still rather go to a program that does more of a procedure than fewer. Most in the transplant field still believe we have too many programs and that some continued consolidation will occur over time which overall will be good for patients.
Thanks for sparking and hosting this great discussion! I have opinions on pretty much everything discussed here...too much to get into in one reply.
Since you're probably the first and only leaders of a transplant program blogging about it, would you be interested in being profiled as the first "Center of the Month" on my blog? The idea is described in the last section of my most recent post. Please contact me for more information and if you're interested (either Mr. Levy, Dr. Hanto, or whoever the appropriate person would be from the BI).
This is a great discussion. I'm in the transplant field and serve on many boards, committees, etc. We're usually debating these issues among ourselves, within the confines of the transplant community. There is a critical need to take this discussion to the general public, to patients awaiting transplantation, to patients who have received the gift of life, to individuals and family members who have donated the gift of life...and this blog is a great way to stimulate such dialogue.
I am one of Dr. Hanto's strongest supporters on the public solicitation issue. Speaking not only as a transplant professional, but as a donor family member and as someone who lost a family member to kidney disease, public solicitation is a very slippery slope and one that condones subtle (perhaps not so subtle) societal discrimination. For instance, those who are likely to benefit the most from websites that promote the public solicitation of living organ donors are those who are: computer literate, socioeconomically advatanged, younger, White, and can write a compelling story. Fewer than 50% of our transplant patients have access to a computer in their home. A similar proportion are socioecomically disadvantaged. While the proportion of African Americans with chronic kidney disease in need of transplant far exceeds the proportion of African Americans in the U.S. population, they are sparsely represented on donor solicitation websites. In fact, people of color are seriously underrepresented not only on these websites, but in the "solicitation" articles published in newspapers. Finally, how does one spin the need for transplantation so that it is favorably viewed by a potential donor perusing the website? Recently, an elderly, overweight African American woman in need of transplantation visited a solication website only to return and ask: Would putting a picture of myself on that site make it more or less likely that I will hear from a potential donor? She also asked me if I knew of anyone who could write a compelling and persuasive story about her need for transplantation...so she could post it on the website. Is this what we want...patients hiring their own PR firms to boost their chances at winning the living donor lottery?
When you walk into a blood donation center as a Good Samaritan, you don't ask to see a picture or a story of someone in need of blood and then limit your blood donation to that individual. You are there as an altruistic donor, to benefit individuals and society. You trust that your blood will be given to those most in need. When you register for stem cell or bone marrow donation as a Good Samaritan, you are not individually selecting the recipient. You agree to be a marrow donor because of its benefits to an individual unknown to you, and to society at large. These acts of donation are truly altruistic and noble, and should be celebrated. I would propose, as Dr. Hanto has, that if you want to be a Good Samaritan living organ donor, simply go to your nearest transplant center and give the gift of life to the patient at the top of the waiting list. That patient got to the top of the list in a way that is considered the most fair and equitable for all.
I am anon 7:05 and I thank Dr. Hanto for his comments; I am glad you added the addendum, which made more sense to me. And thanks to manu varma; I was not aware of your blog and have now bookmarked it for future reference.
Overall this has been a very valuable discussion, but, as anon 3/16 11:06 notes, should reach a wider audience. In reference to my previous comment bemoaning the need for an NEJM subscription to read Dr. Hanto's article in full; I wonder if he would (or is allowed to) consider somehow making this article available in full in a public forum for broader discussion. Actually, I say that with some ambivalence because, unforunately, the media tends to grab an issue and distort it, and before one knows it the whole system has been changed by congressional fiat, without any thoughtful debate. This seems to be the way things are decided in this country. So I throw out the suggestion, but with that caveat.
Many thanks to Paul for broaching this issue in the first place.
Anonymous 3/16 11:06 has pointed out in very personal terms the problems with solicitation and it is appropriate that he/she have the near final word on this discussion. And as he/she has pointed out if you want to be a living organ donor, the most altruistic act is to go to your local transplant center and volunteer for the next most deserving patient on the list.
My name is Dr. J. Lowney and I am one of the founders of Matchingdonors.com. Although I respect Dr. Hanto I believe he is misguided. I could argue each of his points one by one but it would take too long for this blog. Let me simply say that the AST, UNOS and the ASTS came out with specific guidelines fot Transplant Centers to consider when evaluating such patients---"Guidelines for the Psychosocial Evaluation of Living Unrelated Kidney Donors in the U.S." I was a conference participant at the Washington meeting back in May, 2006. The AST has just put out a statement in it's Oct.23rd, 2006 article (sec. 2, part B) that everyone should read--including Dr. Hanto. Matchingdonors.com is fair. There are many reasons why (no time here) but you must realize that we bring new LIVE donors into the system. We do not interfere with UNOS national list. If anyone is inrested they can email me ---drjay09@comcast.net
In 2005 There was a forum at Harvard regarding live organ donation. Dr. Hanto and I were invited speakers. I would very much enjoy another such forum to discuss this important issue. This is a good time to hold this forum in light of Dr. Hanto's NEJM article. Both sides need to be presented.
Dr. Lowney should be commended for his creative approach to assisting patients in need of transplantation. I personally believe that UNOS has not been proactive enough in theliving donation arena.
However, I do not believe that it is entirely accurate for Dr. Lowney to say that matchingdonors.com brings new donors into the system. While it is true that some patients with profiles on the site do not have any potential living donors, many of the patients have chosen not to approach family members or friends, preferring instead to solicit strangers. Some of these family members and/or friends may be excllent living donor candidates. Still others have willing living donors who tested ABO incompatible and rather than pursuing excellent alternatives, such as paired kidney exchange (which could benefit even more patients awaiting transplantation), patients instead have chosen to solicit strangers. So, it is unclear how many new donors matchingdonors.com has brought into the system - it may be a zero sum game.
Dr. Lowney has a reputation as being an excellent and caring physician. I have no doubt that his intentions are noble and that he wants to help patients in need, as we all do. I wish he would argue my points (we have plenty of time and space), rather than resort to simply labeling me or the arguments presented, which by the way are supported by a significant literature and many others in the transplant and lay communities, as “misguided”. I have read the documents he referenced. They recognize as I do that there are no regulations preventing MatchingDonors.com from doing what they do, but that it is incumbent on the transplant community to be thorough in our evaluation of all donors, particularly donors who are strangers to the recipient.
I noted in my NEJM article that media publicity (including internet) “has increased public awareness of the organ-donor shortage and the suffering of patients” and that “Anecdotal information suggests that some donors have come forward and indicated they would not have thought to do so except for the personal stories reported by the media”. I commend Dr. Lowney for increasing public awareness through MatchingDonors.com. But as I also pointed out “If solicitation becomes acceptable and common, patients might elect to solicit a living-donor stranger rather than approach a family member” (the zero sum game that Anon 3/20/07 1:42 mentions). There is evidence that this occurred in Hong Kong where before 1997 (when sovereignty was transferred to China) 50% of kidney transplants were from living related donors. Since 1997 patients have traveled to China to purchase kidneys and living related transplants have fallen to 15-20% of all transplants, as patients preferred to have someone else take the risk rather than a family member. The same experience occurred in Israel where patients until recently could easily travel abroad for a transplant.
I am very supportive of altruistic donation and in this regard agree with Dr. Lowney. I just believe that the fairest method is to donate to the patient at the top of the list or to a paired kidney exchange program which can actually result in multiple transplants that would otherwise have not been possible as was recently reported http://www.metrowestdailynews.com/homepage/x1921696502
I have always appreciated Dr.Hanto's kindness and opinions during this important debate regarding unrelated directed live donation. I have several points. I firmly believe that Matchingdonors.com has brought new donor organs into the "system" because if a patient has been on the transplant list for years
then it is safe to say they have most likely exhausted potential organ donation from friends and family. Most of Matchingdonors patients that have had success/surgery have been on the list for years. I think that we can all agree that we currently face is "supply" problem. I believe if the transplant centers, patients and potential donors are honest and fair--I have faith in all three--and follow the proper rules and regulations (including letting the potential donors know ALL available options that the patient has)increasing live donation will benefit all patients. I understand Dr. Hanto's concern that patients may opt to approach a stranger rather than a family member but as I said, donors should be made aware of all the patients options. Plus, I wonder whether this concern has occurred prior to Matchingdonors.com? Many of the arguements against unrelated directed donation can be asked of ALL live donations and it is my impression that Dr. Hanto is not calling for the dicontinuation of all live donations until there is assurance that no opportunistic people will take advantage of the system. In the healthcare system we must trust our patients. We know there are unscrupulous people in the world and ANY well-meaning system is vulnerable. It does not mean we need to stop the system--it means we need to take more care and tighten regulations to help prevent vulnerability. I would like to ask Dr. Hanto if he thinks it is fair for a brother to donate to his sister as a live donor? If that brother is willing to donate shouldn't he donate to the sickest on the national list? Simply because the sister is fortunate to have a brother willing/able to donate isn't this unfair for a patient without a family member or friend who is not as fortunate? It would seem that "luck" not science or a fair system can be the main factor in a transplant. Is that fair? Comparing what happens in China to the United States regarding organ transplants is not very helpful in my opinion. Dr. Hanto continues to mention the family of a KKK member and the racist request to have his organs donated to whites only. This is apples and oranges with regard to live organ donation. The live donator makes the decision to donate--not a surrogate. Live donation is an act of LOVE not hate and although nothing can be completely ruled out the chance for racist donation is low---we have proven that with several of our inter-racial donations.
Another arguement I read on this blog against unrelated directed organ donation claims that a web site like Matchingdonors.com works only for people "...computer literate, socioeconomically advantaged, younger, white and can write a compelling story." This statement does not represent the reality of the day to day experience of the volunteers at Matchingdonors.com. People of many different races, socioeconomic backrounds, people without computers (help from family, medical staff, the library computer) and older folks have all been helped from our web site.
What may be unfair is someone with the finacial means can buy an ad on a billboard or on TV--someone with a friend who publishes a newspaper who makes a front page plea--someone who has celebrity and can publisize their need. Anyone regardless of who you are, who you know or how much you make can come on Matchingdonors.com. Everyone is treated equally and the help is there for anyone who needs it. The fee to place your profile is waived if you tell us you can't afford it ($595.00 for life time--similar to UNOS) Another point I must make is the idea of "solicitation." Matchingdonors.com does not advertise individual,sympathetic heartbreaking pictures to draw the publics attention. People get on their computers and GO TO Matchingdonors.com to view profiles of patients if they are curious or interested in finding out more about live donation. We don't solicit donors. Our popularity comes from news articles about us, word of mouth and web surfing. We don't have front page pictures of our patients pleading with the public to come to our site and help. I don't see anyone complaining about Jerry Lewis and the MDA, UNICEF or Christian Childers Fund.
I understand that it has been some time since this discussion was brought up, yet I am just finding it and would like to reply. I am not a physician, I am the spouse of a person with ESRD.
My wife was 18 years old when she first had signs of lupus and shortly after her kidneys shut down. She was 2 weeks away from graduating from high school and was unable to walk at her graduation. She was an honor student, involved in many school activities and had a scholorship lined up and was getting ready for college. ESRD stopped all of this. She went from a bubbly young lady to a strained woman in a matter of months.
She waited almost 5 years while doing hemo-dialysis on the list in Florida. During this time, they had trouble with accesses and had put 2 in her neck, one in her chest, a port in her chest and a graft in her arm... In case you haven't realised yet, this is a 23 year old woman. She finally got a call in Nov of 1997 for a cadaveric kidney. She received the kidney and her progress was amazing! Within months, she was returning to her old self.
She took very good care of herself and started working in 2001. She became quite successful in the Property Management industry and managed several properties for a nationally known company. She was doing great and to most everyone, she seemed like a normal mid-20's professional female. This all ended abruptly in 2003.
While working one day she started feeling a little bad. She came home and told me she wasn't feeling well. We rushed her to the transplant center and was immediately checked into OSU. The doctors took bloodwork and were very suprised to see that she was losing kidney funtions, since they had just taken her standard bloodwork a couple of weeks earlier and didn't notice any issues.
My wife and I will always remember the doctor that walked in and said "You're kidney is no longer funtioning". For the six years she had the transplanted kidney, she had come accustomed to being active in her community and in her lifestyle. She walked out of the hospital days later now back in a dialysis routine. She told everyone that she was strong enough to pull through this and it would not get her down again, she was wrong. Once again, within a month she had to pull back to managing one property. One month later, she was a part-time assistant manager. And within another month, she couldn't do it anymore. It was all she had to carry herself 100 yards down the road.
This brings me to the point of my post. My wife is now 33 years old. She still loves life and loves every moment that she is able to do something new. She wants to work again more than anyone I have ever known, yet she can't. She wants to volunteer again and give back to her community and do things that most don't think they have the time to do.
She can't do this... She worked with OSU in an attempt to quickly get back on the list. After months of testing, the Transplant Coordinator pretty much told her that her chances were none to ever see a kidney off the standard lists. Her PRA is out of their spec and living kidney donation is her only real option with IVIG and Plasmapheresis. She has no siblings, her parents are unable to donate, and I am not a match. Of all our friends that were tested, only one came close and the coordinator talked her out of donating.
We are now looking at matchingdonors.com because we really don't have any other options. The "standard" options don't always work. It is sad to see anyone in this position, but someone with so much potential really hurts. We have seen many come and go in the dialysis clinic and she still remains there with no true hope.
So, for someone to sit around and say that an option like matchingdonors.com or a matching service is not fair, you may want to think about what fair is. I don't feel that 20-30 years of dialysis is fair for someone who could give so much back.
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