My 23 year old son needs a kidney, what are my legal options?

[JamesD]

Hello, I recently found out my son needs  a kidney. He is 23, lives in NYC is still in good health and O+ is his blood type. My wife was tested and was not a match, I am an ex athlete who played in a major American sport for 16 years and have physical ailments that disqualify me from donating. Is there anywhere I can legally travel in the world to facilitate the purchase of a kidney? Yes I am asking where it is legal to do this.  I find it ridiculous that it is illegal to begin with.  If two people can benefit from something that saves a life why would that be wrong? I am sure many people here will disagree with my question but I will ask them, what would you do if your only childs life was in danger? My answer is anything I can.

So I ask is there anywhere I can legally facilitate this ? Cost is not a factor in any way shape or form. If the option is legal and safe for my son and the donor there is nowhere I won't go and no cost I won't pay.


Please help me


James
Jamesd81692@gmail.com

[Fr Pat]

     This does not answer your question, but may offer you some helpful information. You wrote that your wife was tested but "was not a match". If she is healthy enough to safely donate a kidney it may be possible to arrange a "swap" with another family in the same situation: your wife would donate to that person, and that person's incompatible donor would donate to your son. Two sites that have extensive data bases of patients with willing but incompatible donors and arrange such exchanges in the U.S. are www.kidneyregistry.org and www.paireddonation.org . Other incompatible but willing donors (relatives, friends, neighbors, church/synagogue members, college friends, co-workers, etc.) could also take part. This is easier than in the past, as it is now not necessary for donor and recipient to have their surgeries in the same city, as the removed healthy kidney can now be safely transported. As your son is an "O+" he is compatible to receive a kidney from another "O+", or from an "O-" as the "+" or "-" does not matter in kidney transplants. About 47% of Americans are type "O" and thus compatible to donate to him.
     Again, I know that this is not answering your question, but I wanted you to know that there are other options available for possibly having a safe transplant without leaving the country. Many people are not aware of these options.
   Fr. Pat

[JamesD]

Father Pat,

 I have researched the swap possibilities and if that is our only option we will pursue it. Have their been many success stories you are directly familiar with utilizing this process?  Thank you so much form taking the time to respond.

[JamesD]

Deepika,

 I tried to respond earlier but I guess my post did not send. To answer your question my sons blood type is a match for anyone, it is the one blessing we have been granted in this process. Where do you live Deep? Would you be willing to fly to NYC for testing? Do you have any answers to my questions in my original post? What would make you want to donate your kidney? I am sorry for all the questions, the process is just overwhelming .

[Karol]

Actually, your son cannot accept any blood donor except O, unless he goes through a desensitization treatment. Our daughter is 27 years old and also type O, and we are holding off on desens. because of the long-term cancer risk.
As far as transplant tourism, I would be very careful. You don't know how good the tissue matching is in other countries. I had a friend who went to Israel for a transplant, but returned to the US in acute rejection. Most hospitals here do not want to treat patients in this type of situation, but he was able to finally get rejection rescue treatment and they were able to save the kidney.
Good luck!

[JamesD]

Karol,

 Thank you for your reply, I am aware of the steps needed if our donor is not O. My family has never even considered passing on a donor due to the desensitization treatments.  Do you really think the long term risks for cancer are so great that a living donor should not be considered?  How strong is the data on this issue? As I said before when we fimd a suitable donor we plan on moving forward even if desensitization is required.

[Clark]

Dear James,

  Have you had a candid conversation with your son's nephrologist about the geographic disparity in waiting times between regions and DSAs (Donor Service Areas) in the US? Your single most cost effective purchase option that is legal is multiple listing in areas with a shorter expected wait time than NYC. If you are wealthy enough to take advantage of this, your son is fortunate.

  Just a caution, you are posting to a board searchable and readable by the entire world. Iran is the only nation and legal jurisdiction on the planet that allows compensation for sellers, and unless you're Iranian, you're not eligible for that. You imply you are willing, if and only if legal, to make a purchase from a seller. Bear in mind the FBI has already arrested one broker, and we know posts here have been read by their agents. It sounds like you are already well informed about your legal options, so please recognize that while we have perhaps the deepest possible empathy for your situation as any group anywhere, we also struggle against the exploitation of would be vendors and would be buyers by unlawful brokers. Best wishes, take care.

[Fr Pat]

Dear James,
      Yes, over the years I have read (at this site and elsewhere) of successful "swaps" arranged through those sites. But I'm sorry that I can't give you any hard data on percentage of success.
     I have also known a surprising number of cases where once the need was known a quite unsuspected volunteer came forward, sometimes a casual acquaintance or neighbor who was not really close to the recipient. So it is worth getting out the information about the need and the possibility, even though it means losing some privacy. I know personally of several people who decided to donate a kidney when an announcement about the need was made at their church or synagogue, even though they did not even know the name of the person.
     With regard to your original question: as far as I know Iran is the only country where it is entirely legal to give up an organ for transplant in return for money, but it is only legal there between Iranian citizens, not for foreigners. Their system appears to work. The government agency supervises the transaction to try to guarantee that the donor is healthy enough to donate safely and to determine the payment amount. They no longer have a waiting list for kidneys. But again, it is only among for their own citizens.
     There are other countries where the sale of organs is illegal, but the government looks the other way when the organ is sold but the seller pretends to be a friend or distant relative of the recipient, so the paper-work is done even though everyone knows it is illegal. Other countries do organ sales and surgeries entirely illegally, paying off the authorities.
     As Karol noted, a big danger in using overseas transplants is that the brokers may not ensure that the sellers are actually healthy enough to donate safely and are free of diseases that are passed on with the transplanted organ. There is likewise the danger that the seller will not even be paid the promised money by the broker after the surgery, nor get proper post-operative care.
     Although mainland China has officially outlawed the practice, it appears that they continue to sell the organs of executed prisoners to foreign buyers, and will even schedule the execution for the convenience of the buyer with enough money.
     So while your concern for your son is understandable, you would have a lot to think about before opting to try a foreign transplant.
     I forget to mention another option in the U.S which is the "list exchange" which one or two people at this site have used. If there is a willing but incompatible donor some hospitals will allow that donor to give the kidney to whichever patient the hospital chooses from the waiting list. In return that donor's relative is moved to the top of the waiting list for a kidney from a DECEASED donor thus greatly reducing the wait time. (Note: kidneys from deceased donors, on average, do not last as long as kidneys from living donors.)
     Another option, which I am less familiar with, is www.matchingdonors.com . Here persons willing do donate look over postings from persons in need of a transplant and may choose one to donate to. (Hospitals may take precautions in such cases to try to make sure that no money has been exchanged under the table.) I believe there is a fee involved to post at that site. They have arranged some successful transplants, but I don't know how many.
      I apologize if I am dumping too much information on you, but you should also know that while in the U.S. it is illegal to buy or sell an organ for transplant, it IS legal for the recipient to reimburse the donor for ALL financial losses suffered because of the transplant (lost wages during surgery and weeks/months of recovery, travel/lodging expenses for testing and surgery, etc.) The donor does not GAIN any money, but is reimbursed so as not to LOSE any money. There are willing donors who are unable to donate unless someone covers their lost wages, expenses, etc. So if you are able to do so it would be wise in your search postings to explain that you would reimburse the donor for all lost wages and other expenses.
     best wishes,
         Fr. Pat

[sherri]

James,

You've been given a lot of good information regarding obtaining a donor for your son. I am somewhat familiar with the Incompatible Kidney Transplant Program at Johns Hopkins. This is the link if you are interested http://www.hopkinsmedicine.org/transplant/programs/kidney/incompatible/

The transplant nurse coordinator who is knowledgeable about this type of treatment is Mary Jo Holechek. I just attended a Transplant Nursing Conference and she gave a very good talk about the incompatible program with data to support it. There is also the paired exchange programs as well.

Depending on where your son is in his disease process you have time to start researching and looking at data about swaps, chains, plasmapheresis etc. While it is true that type O can only receive from an O donor there has been some successful transplants using certain type A donors with plasmapheresis.

As Fr. Pat said, there are many recipients who are fortunate to find willing donors just by getting the need out there in their communities. You can reach out to church groups, synagogue, school, youth groups etc. You never know, someone may want to learn more about becoming a donor once you fill people in on your son's illness and need for transplant.

Best wishes and keep us posted on how things turn out.

Sherri

[Clark]

Just to clarify about Iran, while their wait list is reportedly short or non-existent, depending on what details of which report one considers credible, reliable reports have made clear that the vendors are predominantly married women, and the presumption is that they are experiencing coercion. These reports go on to note the lack of donor followup and the high rate of surgical complications they suffer. To describe this as a system that works, Fr. Pat, begs the question, for whom? Not the actual sellers, for the most part.

[Karol]

Karol,

 Thank you for your reply, I am aware of the steps needed if our donor is not O. My family has never even considered passing on a donor due to the desensitization treatments.  Do you really think the long term risks for cancer are so great that a living donor should not be considered?  How strong is the data on this issue? As I said before when we fimd a suitable donor we plan on moving forward even if desensitization is required.

Cancer is always a risk with immunosuppressant medications, we know that, but the benefits outweigh the risk. With desensitization, it is like adding even more suppression of the immune system, and with a young person, the risk may be too great. Our doctor said if Jenna were 45 years old, the desensitization would likely not be as much of a concern, because getting cancer in 20 - 25 years would be within the norm. But for someone so young, it could be devastating. That's why we are looking for an O donor, but also because an O donor is much more dynamic in a paired exchange program, compared to other blood types. Bringing an A, B or AB to a swap will not be as effective, as the majority of people waiting for a kidney are O.
I understand your frustration and am walking the same path. I hope you find an answer. Do you know your son's GFR?