Dear Rob,
I have complete empathy and sympathy for would be recipients facing long waits on dialysis, as you know, I made a preemptive gift to my unrelated recipient. The difficulty I have is the imputed moral equivalence exhibited by so many, as you describe. The recipient's need for treatment is not equal to the donor's willingness to take personal health and well being risk to provide one among an array of potential treatments for the recipient. That is a decision each of us are entitled to make, without our own government or wider society putting their thumb on the scale of our consideration by introducing an economic incentive large enough to entice more living people to accept this risk than already do, by definition putting aside formerly decisive misgivings in favor of payment.
The ESRD sufferer, regardless of cause, is a victim of a disease, and is entitled to seek treatment. Appropriate diet is an effective treatment, for a relatively short time, a tragedy. The outrage we all feel at untimely death due to disease or any cause motivated research for better treatment, and dialysis is more effective. Successful transplantation from identical twin living donors was superior for the recipient, but brought pain, scarring, and unquantified risk of longer term complications to the donor. Not to mention how rare it was for a would be recipient to have a healthy identical twin available, presumed willing, and also presumed to not be susceptible to renal failure from the same, potentially inherited, cause and his or her twin. The dialysis industry grew, and continues to grow even though advances in immunosuppressives drug therapies have permitted the wide diversity of deceased and living donor relationships we now see.
Statistically, dialysis is superior to diet change alone, transplantation is superior to dialysis, and living donor transplantation is superior to deceased donor transplantation, FOR THE RECIPIENT. Not for the living donor. Critically, these are broad statistical differences, not absolutes, and not universals. I have met extraordinary individuals surviving for decades without dialysis with double digit creatinine. I have discussed the implications for allocation policy for the known and unexpected groups and individuals whose health fails rapidly despite dialysis, making a wait even of months a death sentence. I know stalwarts on dialysis who are moving into their second decades without ever once considering taking a deceased donor kidney from "the kids who need them more" or a living donor kidney "risk someone else's life, and my own in surgery, so I can bananas again? Are you crazy?" All of us here have faced the certain knowledge that some donors do die, on the table, in the recovery room, on the ward, at home weeks, months, or years afterward. Coma, disability, pain, increased risk of ESRD ourselves, hard, hard, hard, to look at straight, discuss honestly with our loved ones, and explain why we're still going forward. Yet we do.
Could money bring in vendors enough to more than make up for an expected decline in donors? Enough money, I believe so. A strong, argument to relieve the suffering of hundreds of thousands, and more very day. But what of the vendors? Will we permit an exploited underclass to be created and left with the token fig leaf of follow up we've accepted? The fig leaf that even now is being actively resisted by OPTN member representatives at the ongoing regional meetings? What about the disturbing number of tragic stories posters here at LDO have shared with us over the years, of surgeons and transplant centers who do not, will not, own an error or happenstance and provide care, care that CMS says it does and will cover? Never forget that our border is porous, even now admitting many foreign nationals to be "donors" when sworn testimony has been offered to the FBI that at least some of them are vendors, not donors, reputedly with the knowing complicity of transplant center administration, staff, and medical and surgical team members. Or that transplant centers have many recipients getting their followup care domestically after surgery overseas.
Some say, the black market and its ills will only be eliminated by a sufficiently large, efficient, legal market. That may be so. But unless I see a track record over time demonstrating that the transplant professionals have learned, have taken ownership, and have effectively restructured the business so that the incentives unambiguously are against exploitation, good studies are published, and truly universal buy in to a "failure is not an option" mindset, then I can not accept on faith that they will do any better for vendors than they have for us as a group. Granted, it seems the vast, overwhelming majority of us do well enough to lend credence to their presumption that all is well. It is how they handle the exceptions, or rather, how some of them fail to handle those of us for whom the picture is not perfect, that they must be judged on. Until they prove they've gotten this under control we can not trust that vendors will be treated any better.
Topic: LinkedIn group discussion: Should donors get paid? (Read 5883 times)