Why Not Everyone?

For a while I have considered posting on “the public option” in healthcare that I am most familiar with, the Medicare End-Stage Renal Disease Program. The history of this disease-specific program is fascinating, and I think it provides a good example of what “the public option” could be (and why private insurance companies are scared).

See, you can get public coverage now if:

1. You are employed by the government (like congress)
2. You are or were in the military
3. You are of “retirement age”
4. You are disabled
5. You are poor with dependent children or you are a dependent child
6. You have kidney failure

That’s a whole lot of health care already run by the government. In my experience, it works pretty well with far fewer headaches than many of the private insurers generate.

I was toying with a post about this topic; however, someone has provided a far more compelling story than I could tell as a physician. Jennifer Nix in Salon tells us the history and realities of the Medicare ESRD program through a family saga:

My family's 36-year journey with end-stage renal disease -- the only long-term, chronic disease classification for which the U.S. government provides insurance coverage, regardless of age or income -- offers a telling case study into what once met Congress' standard of an unequivocal, moral imperative to provide public-financed health insurance. My family history mirrors exactly the period from 1973 to 2009, during which this entitlement program has allowed access to life-saving dialysis and kidney transplants, treatments previously denied to all but a very privileged few.

Read the full story: I love my socialist kidney.

We have identified a number of groups for whom we, as a society, feel a moral imperative to provide health coverage. Isn’t it time that a nation with our wealth and spirit extends that opportunity to all of our citizens?

Photo courtesy of PhotoXpress.

A True Story

Last week I wrote about My Sister’s Keeper, a novel and movie to be released this Friday, June 26. Today I also tell a story about the need for a kidney transplant, but today’s account is true.

The story I tell is not one of my patients; that would violate a number of rules. No, this tale belongs to someone I know through friends and relatives. If she wishes to claim this saga as her own, she may do so by commenting. I will not “out” her.

The girl entered this world 18 years ago into a loving family. She had hypoplastic left heart syndrome, a condition in which the part of the heart that pumps blood to the body is malformed and cannot do its job. The best therapy for this condition, at that time, was cardiac transplantation. On her first roll of the dice she got lucky. An appropriate infant donor was found, and her life continued.

She grew up like most children. Although she required medicines to keep her body from rejecting her heart, she walked and talked and acted like a normal kid. Unfortunately anti-rejection drugs can damage other organs. After a number of years her kidneys were failing. Once again the gods smiled on her, and her mother was able to give her a transplant.

With high school completed, she dreams of going to college this fall and living independent of her parents, and she has been accepted. Finances are tight, but the dream is still in sight. Except…

Except her tranplanted kidney, like most, is not going to last forever. When the damage became apparent, a work-up for a new kidney began. Unfortunately, she has developed antibodies to a number of histocompatibility loci: the things that the body recognizes as self or not-self. The more antibodies the body has formed, the better the match has to be. This girl now requires a virtually perfect match. No one in her extended family fits.

She has already defied the odds. She now faces dialysis and a long wait for a new kidney. She has relatives willing to donate; they hope that someone who is a match will be willing to make a swap (see page 1 article in May Issue here).

She still holds onto her dream of college away from home. It can be done on dialysis, and I suspect she will figure out a way to make it happen. Compromises may be necessary. But she still hopes for that magic kidney.

No Hollywood ending here. Not even a reality TV ending. Just an 18 year old girl with a dream for a new kidney and a normal life.

Every transplant center has similar stories to tell. Please consider being an organ donor after you die, or even before.

Click here for more information on being an organ donor.

Click here or on the logo for more information on the Alliance for Paired Donation.

Impossible, Improbable, & Wonderful

Last Friday the first chatter about an upcoming movie began hitting the blogosphere. My Sister’s Keeper got my attention because it involves a kidney donation situation. I picked up the novel Friday and read it to see what was coming.

SPOILER ALERT: I may relate things in this brief plot summary that you don’t want to know before you see the movie. Or better yet, read the book. Consider yourself warned.

This family (Mom is Cameron Diaz) has two children, son Jesse and daughter Kate. The daughter develops a rare form of leukemia. Her best chance to survive involves a transplant from an HLA identical sibling – which her brother is not. The parents select an identical embryo and give birth to a sister, Anna (Abigail Breslin). Her cord blood is used to transplant Kate.

Kate does well for several years, but then relapses. Anna then donates lymphocytes, granulocytes, and bone marrow for further procedures for Kate. After the second transplant the tumor may be licked, but the drugs to control graft-vs-host disease toast Kate’s kidneys. For some reason she has to have an exact HLA match. Her dialysis has “stopped working.” Unless Anna hands over a kidney, Kate will die. She sues for medical emancipation at this point (and gets Alec Baldwin for her lawyer), setting up the conflict for the book.

So let’s start with what is wonderful about this book. It may be the best picture of the effect of chronic illness on a family that I have encountered. Too many depictions have saintly parents working tirelessly to produce a miracle for their child, with no ill effects on others besides the medical establishment. From my read, Anna suffers the physical effects of donating to her sister, but seems to be rather well-adjusted compared to the rest of the family. The whole family exists in a state of readiness, waiting for another crisis or illness to disrupt their lives. The brother feels invisible, and both parents admit they have, at some point, “given up on him.” He brings his own pathology as well. The book makes the family members neither saints nor ogres, but human beings trying to take on a bad situation as best they can. I hope the movie can convey this as well as the prose.

What bothered me about the book is the kidney transplant situation. I cannot name a center in North America that would consider using a 13 year old donor, even if she were willing and the circumstances dire. The descriptions of dialysis would imply in-center hemodialysis. It is unclear why this procedure has “stopped working.” Can’t they do more? I see patients survive hemodialysis, even after cancer treatments, for years. We usually require 5 years cancer-free before we consider survivors as transplant candidates. OK, I understand that the kidney was the appropriate organ to set up the dramatic conflict in the story. I guess I will grant some literary license on this point; however, I can’t figure out where Kate’s nephrologist was in the subsequent proceedings. The emancipation trial presents testimony from a psychiatrist, the head of the hospital ethics committee, and Kate’s oncologist. The latter is who testifies to Kate’s renal needs. Huh? This is a book – you don’t have to pay extra for another character! It would have required a bit more research to bring the nephrologist in and somehow make it realistic, perhaps explaining how this extraordinary set of circumstances came to be.

LAST SPOILER WARNING!!!!! PROCEED AT YOUR OWN RISK!!!!!

So we have covered the wonderful and the impossible. What is improbable? Well, when I first heard the plot summary, my reaction was, “the only way we take 13 year old donors is as cadavers.”

Yup, after the trial, Anna is in a car accident with a massive head injury and ends up giving a kidney to her sister after all. Impossible? No. Improbable? Yes.

There is a lot more to the story than what I’ve discussed here. The book is an excellent read, although as a nephrologist I had to really suspend disbelief and forgive some literary license. I still ended up sobbing into the better part of a box of Kleenex at the end. I am told they altered the ending of the movie, but previewers tell us we will still like it. I guess I will have to wait another 10 days or so to find out with the rest of the world.