Why Doesn't the Kidney Transplant Waiting List Reflect the Missing 500,000?

This is a follow-up to the last post found here.
I think there are several possible components which together combine to give at least a partial explanation as to where are the missing 500,000 people with ESRD who are not on the kidney-transplant-waiting-list.
I think that a critical but correctable component of the problem is that the supply of kidneys that become available annually are so miniscule compared to the demand for kidneys, that patients and their physicians often face the grim reality that (under the current manner in which UNOS appropriates organs) their chances of obtaining a kidney are so slight that they make the sad (but often economically rational decision) not to undergo the financial, physical, and emotional burden and trauma of living with the constant anxiety of waiting for an organ that may never come so they just fore-go the process altogether and survive on maintenance dialysis.
This problem can be at least partially ameliorated by expanding the supply of kidneys available for transplantation - like by increasing the supply of live donors! (Another more long term approach to the problem is to screen high risk populations for high blood pressure [like African Americans, people with diabetes, etv.] before they present with symptoms of ESRD so that their blood pressures can be controlled and their kidneys continue to function at an acceptable level. This would decrease the amount of kidneys demanded on the transplant list.)
Some other components that may explain the missing 500,000 people from the kidney transplant waiting list may include:
1. Some people are so sick they would probably never live through the procedure so they don't bother trying to get on the waiting list.
2. Geographically, some people are very distant from a transplant center so they might not be able to get to the transplant center in time to get the organ so they don't bother signing up (but keep in mind that the time sensitive component of transplantation goes away with live-donor-donations).
3. Some people cannot afford the costs involved in the transplant. For instance, they might be denied a spot on the transplant list if the transplant center thinks they may not be able to afford the anti-rejection medication needed to elongate the lifespan of the organ.

The Missing 500,000 People: How Many People Could Benefit from Kidney Transplants?

Does any one know how many people can actually benefit from a kidney transplant in the U.S.? I'm sorry to say, the answer is no! There is an exact number of people registered on the waiting list, but if you are not registered on the list (if for example, you cannot find a transplant center willing to accept you) you are not counted even though you may desperately need a transplant to elongate your life!
Often, a problem cannot be dealt with appropriately until the problem is identified and the scope of the problem understood. There is a severe shortage of organs available for transplantation in general. I will only deal with the acute shortage of kidneys for the time being.
According to the OPTN, or Organ Procurement and Transplantation Network (which is affiliated with the the DHHS, or the Department of Health and Human Service's HRSA, or Health Resources and Services Administration) there are only 88,392 individuals awaiting a kidney transplant on their waiting list. (Accessed from http://optn.transplant.hrsa.gov/latestData/rptData.asp
based on OPTN data as of April 29, 2011)

According to the USRDS, or the United States Renal Data System, as of 6/30/2010 there were 591,642 people in the U.S. with ESRD. See here

That means there are over 500,000 people with ESRD who are not on the kidney transplant waiting list!!! Most of these people are on dialysis to keep them alive.
People who receive transplants live substantially longer than those on dialysis.
See here for more specific data on the subject.

So why doesn't the kidney transplant waiting list more accurately reflect the number of people who could benefit from transplants?
I'll try to partially answer that in another post.

Follow Up: Arizona Restores Medicaid Coverage for Transplants

Reuters is reporting here that Arizona has restored funds to its state Medicaid program so that it will once again cover organ transplantation once again. See one of my previous posts here where I vociferously attacked the cuts and the humanity of all involved in letting a lady die as a result of the cuts.

Its good to see that the people of Arizona (as reflected by the action taken by their elected representatives) have taken appropriate action to rectify an unconscionable piece of legislation which was resulting in the deaths of citizens of Arizona.

Again, this was not only a government-made disaster, but it was also a man-made disaster on many levels including the family, community, and medical field levels.

I dare to hope that there were some hospitals which performed transplants as charity care during the time when there was no Medicaid coverage. But I'd love to actually see some proof of that.

NYTimes Explores Dialysis: At What Cost Do We Keep People Alive

See this interesting (though slanted) article about dialysis, governmental policies which cover the cost of ESRD, and end stage renal disease (which includes dialysis treatment), and the NYTimes's slant that people who are very sick and very expensive to treat may be better off dying than going on dialysis (remind anyone of death panels?).

The NYTimes does do thoughtful readers and listeners a service by allowing dialysis patients to describe their lives in their own words. Listen here.

The bottom line is this - irregardless of what the NYTimes thinks. People living with ESRD, their doctors, and the stakeholders who pay for the treatment (like Medicare, insurance companies, and Corporate Self-Insurance health plans) should insist on the highest quality evidenced based standard of care for ESRD treatment which includes dialysis treatment. If this standard of care is applied, people with ESRD can live longer and costs can be contained.

Confronting the Intrenched Organ Donation System: It is possible

Below are examples of some blogs, websites, and articles which all confront the reality of the current (possibly semi-dysfunctional) organ transplant disbursement system and attempt to shine light on it, study it, and offer ways to improve it. Or, they break with the current system altogether and blaze alternative paths to increase the supply of organs available for transplantation.
I don't attest to the veracity of the claims made in these links. Make your own judgment. But the current system can most assuredly be improved. It will take people and organizations similar to those linked to below who aspire to improve the current system to create the change necessary which will lay the foundation to increase the supply of organs and thereby save lives.

For a live kidney donor recipient's personal outlook on the entrenched interests opposing live-donor donation see this website.

For a blog about alternative methods to increase the supply of organs available for transplantation see here.

For a website that attempts to link live organ donors with people in need of a transplant see this website.

For a press release about a grant awarded to study the outdated organ disbursement method and how it causes unequal access to donated organs based on where a person live see here . Also see here for an old post on the issue where I propose a study designed partly to determine the effect of a person's distance to a transplant center and the time it takes for the person to receive an organ. Yes, its a very technically worded post so don't say I didn't warn you.

And finally, see this link for a book titled, "The U.S.Organ Procurement System" where the authors, David L. Kaserman and A.H. Barnett engage in a thorough economic analysis of current U.S. organ transplant policy, the problems with it, and a proposal explaining how organ markets would operate in a manner which would save lives by increasing the supply of organs available.

Jonas Salk created the Polio Vaccine...Lessons for Kidney Transplantation

"Hope lies in dreams, in imagination and in the courage of those who dare to make dreams into reality."
The preceding statement comes from a memorial at the Salk Institute which captures
Dr. Salk's vision.
Dr. Jonas Salk prevented millions and millions of deaths when he created and engineered the polio vaccine in the 1950's. I am keenly aware of the human suffering he prevented...my grandmother grieved the rest of her life for her 17 year old son, Martin, who died of polio in September, 1954 - while Salk's new vaccine was being tested on one million school children.
Presently, in California, there is the Salk Institute which carries on the legacy of Dr. Salk which researches various phenomenon ranging from cancer, diabetes and birth defects to Alzheimer's disease, Parkinson's disease, AIDS and plant biology. See the Salk Institute's description here.

I was thinking about the quote..."Hope lies in dreams, in imagination and in the courage of those who dare to make dreams into reality."
Until their are enough courageous people willing to attempt to find a solution to the current shortage of kidneys available for transplantation, the hope to solve the problem is like a fleeting and illusory dream - and not a very hopeful dream on the cusp of being turned into reality.

Steve Jobs' Health, Apple Computer, and Organ Transplantation Possibilities

You probably have heard about Steve Jobs, CEO of Apple, taking a medical leave of absence so that he can focus on his health. Here is the press release. Previously, he has battled pancreatic cancer and undergone a liver transplant.

Original post from Monday, January 24, 2011 is found below:

I wish Steve Jobs all the best and a quick and complete recovery and respect his right to privacy.

I hope Apple champions an intra-company live donor organ donation program whether Steve Jobs is currently in need of a transplant or not because this can bring a revolution to the world or organ transplantation. Corporations like Apple pay towards their employees health insurance costs so they have an economic incentive to keep their employees as healthy as possible. Also, the good-will created by saving and improving the quality of life of their employees is priceless. And it may just contribute towards saving the life of their CEO, Steve Jobs.

I think that an astute Medical Coordinator or Benifits Manager at Apple may want to sieze on the oppurtunity created by the Steve Jobs health situation and implement a corporate initiative to encourage live donor donations from healthy Apple employees to other Apple employees in need of transplants (FYI - therefore, this would work for kidney donations, bone marrow donations, and partial liver donations, depending on transplant center policy.)
Three previous blog posts linked to here, here, and here discuss various statutory laws that decrease the ability to increase the quantity of organs availible for transplantion along with a few of my ideas to improve the situtation including intra-company live donor donation programs.