Expanded Criteria Donor Organ: New Hope

Many people who are on the kidney transplant waiting list die while they wait for a kidney transplant. Many other people die without even being put on the transplant list.
"Performing renal transplant with a perfectly healthy kidney to all the patients with ESRD is
an ideal scenario. But growing waiting lists and shortage of kidneys makes it necessary to
make some compromises. Use of so-called, marginal or borderline donors can increase
donor pool by almost 20 to 25%." (Renal Transplantation from
Expanded Criteria Donors. Renal Transplantation – Updates and Advances. Pooja Binnani, et al). See here to see the full article on the subject from which this quote was taken.
To put it in plain english, if a person cannot a brand new BMW does that mean he doesn't buy a car at all or does he buy a used Toyota Camry? Obviously, the person takes what they can afford to drive. A person would much prefer an Expanded Criteria Donor (ECD) kidney and significantly increase his probability of 5 year survival than insist on a Standard Criteria Donor (SCD) kidney and being dead by the time it would be his turn on the waiting list.
According to information on UC Davis Transplant Center website found here,  "[s]tudies have shown that transplant patients who receive either SCD or ECD kidneys have a superior survival when compared to remaining on dialysis." It also states that, "[a]ccepting an ECD kidney may significantly decrease the amount of time a person waits for transplant. The ECD kidney comes with some risk for earlier graft loss but the exact risk is unknown. A good estimate is that 8 of 10 ECD kidneys will still be functioning at one year while 9 of 10 SCD kidneys will be functioning at one year.  At 5 years, half of ECD kidneys will still be functioning compared to 7 of 10 SCD kidneys."
Below is the survival percentage for people with ESRD depending on their mode of treatement at the 5 year point of time. Kidney transplantation  offers highly superior survival rate - 33%-39% increase in 5 year survival - compared to the other treatment modalities (See Below). Even if the use of Expanded Criteria  Donor Kidneys shaved a few percentage points off the 5 year survival, most people will still benefit from receiving these organs that are currently frequently discarded.
Again, while in an ideal world everyone would receive the highest quality kidney possible, people's probability of 5 year survival is greatly increased even if they receive an ECD kidney. 

	2004 ESRD cohort: 5 year survival based on treatment modality
Dialysis	34%
Hemodialysis	34%
Peritoneal dialysis	40%
Transplant	73%
based on http://www.usrds.org/2011/view/v2_05.asp

Man Survived 39 Years on Dialysis: A Call to Action

Dr. Robert Rigolosi reminisces about his patient Ed Strudwick who lived for 39 years on dialysis. And Dr. Rigolosi was Ed's physician for all 39 years that he was on dialysis. Read Dr. Rigolosi's thoughts about his patient here.

Let Ed Strudwick's great example of living 39 years on dialysis give hope to the ESRD community that dialysis is not a death sentence, but rather it can be a life giving process which enables people to live long and productive lives!

Researchers (and ESRD patients themselves) should study and analyze dialysis centers and physicians whose patients are on the far side of the bell curve to try to figure out what increases life expectancy among these ESRD patients so that best practices can then be shared among the general ESRD population so that all people can benefit from what these physicians and dialysis centers are doing to elongate the lives of their patients.

Here is a very interesting excerpt from the article regarding longevity of patients on dialysis in Dr. Rigolosi's own words:

"Remind your dialysis patients that compliance is key. Ed's longevity was due to his full compliance with diet, medicine, scheduling, and follow-up. If you have a compliant patient like this, you can expect long-term survival."

"We have about 200 patients on dialysis in our center, and I would guess that 10% or 15% of them have been on dialysis for more than 35 years. We may have another 10% that have been on 20 to 30 years.[italics added] Patients do best when they embrace their new disease-driven lifestyle and accept what they have to do. Be sure they understand that they can't be too careful."

And it is important to keep in mind that according to the US Renal Data System 2011 Report, that 5 year survival probability rate in 2004 for people on hemodialysis was only 34%!

Update: Hospital Relents: Little Amelia Has Hope for Life - She Can Get a Kidney Transplant !

We have a nice update to a post from a few weeks ago. The post is found here. Basically, the family of 3 YO girl, Amelia Rivera, understood after meeting with their physician that their daughter was being denied a kidney transplant because of her "mental retardation."

CBSNews reported here that The Children's Hospital of Philadelphia issued a joint statement with Amelia's family that "as an organization, we regret that we communicated in a manner that did not clearly reflect our policies or intent and apologize for the Riveras' experience." Amelia's parents said in the joint statement that "despite an unfortunate encounter a few weeks ago, we hold The Children's Hospital of Philadelphia in high regard. Our hope is that this experience will heighten the medical community's sensitivity to and support for the disabilities community."

Let's hope that a suitable donor kidney is found for little Amelia expeditiously and that the transplant goes as smoothly as possible.

Kudos to everyone who inundated the hospital with comments and complaints which surely helped encourage them to get their act together and not to deny a transplant to one of the most vulnerable members of our society.

Raising Awareness for Live Donor Kindey Donations through Social Media

How can the power of social media and multimedia be utilized to increase live donor kidney donations?
Some random thoughts...
1. A youtube channel where people who need a kidney tell their story to the world in hopes of finding an altruistic donor.
2. A reality show about the apprehension and angst of an individual and their family as they wait on the kidney transplant waiting list hoping to get a kidney before it is too late.
3. A reality show/youtube channel dedicated to following a person on dialysis who then gets a transplant and compare the drama relating to the transplant surgery and also to compare their (quality of) life before and after the transplant.
4. There already is a twitter feed to monitor all things related to ESRD and kidney transplantation here. Dr. Robert Hickey, a great hero and advocate for all things related to kidney transplants, constantly tweets all types of info and links to articles related to ESRD (fyi, he also tweets strong political stuff there so you'll either hate it, love it, or you can ignore it.)


Anyone else have suggestions???
Dr. Hickey's comment:
Robert F. Hickey, Ph.D.Feb 17, 2012 12:04 PM

We would be well served by implementing every option available to encourage human organ transplants as long as they are legal and ethical. However, unbelievably, there are those, individuals and so-called non-profits, doing evrything they can to discourage patients from advocating for themselves. More on that issue below.

A reality show focusing on the frustration, anguish, and fear of patients waiting for organ transplants and their families would be extremely revealing. CBS attempted to bring a weekly show, Three Rivers, to the audience. It didn't catch on!

The show was set, ironically enough in Pittsburgh, considered by some to be ground zero in the transplant world. It also happens to be the town where the University of Pittsburgh kidney transplant center was recently shut down. Patients were given contaminated organs. The show was stilted and not a reflection of what actually happens from a patient/family perspective.

The transplant establishment has engaged in unfair and unethical efforts to minimize the impact of social networking by patients to find living donors. This week I received 2 calls from patients who were told they could not get kidney transplants if they found donors through www.matchingdonors.com or any other such Internet site!

Two weeks ago, Dr. F. Coors, at University of Colorado made a public statement indicating that social network sites were dangerous because you never know what you're getting. Nonsense! A prospective donor and Transplant recipient will go through 6 to 9 months of testing and intrusive interviews before any transplant will be approved. I've been through along with my donor in 2004.

Some transplant centers claim they will accept prospective donors who are identified through social media while not being sincere about their intentions. This happened this week to 2 patients at Cedars-Sinai in LA. Both presented with altruistic, non-related, living donors for kidney transplants. One was told Cedars transplant team would not accept any donor without insurance. The other was told no donor who had to travel to the hospital would be accepted. First, in the case of kidney transplants, Medicare/Medicaid will pay living donor medical expenses. This includes any medical issue arising from the transplant for several years. Many recipients also have private insurance in partnership with the government coverage. Secondly, there is no valid or ethical reason to disqualify a prospective donor based on where they live within the USA. These are smoke screens.

The point is, we can do all we can to promote organ donation. However, if the powers that be in the transplant industry don't stop erecting manufactured hurdles to transplantation, nothing is going to help. The so-called non-profit structure of the US transplant system is a complete sham. UNOS and the 58 Organ Procurement Organizations across the country and their managers have become millionaires on the monopolistic system they control. When that monopoly is broken innovation will come and the transplant waiting list will be resolved within 24 months.

As long as we have Organ Procurement Organizations making $50 million to $140 million annually on procurement fees, organ sales prices, the system will not change! As long as executives at UNOS and the OPO are being paid $500,000.00 to $700,000.00 per year, the system will not chgange.

Update: Steve Jobs Resigns: Reposting an Old Post Titled: Steve Jobs' Health, Apple Computer, and Organ Transplantation Possibilities

Steve Jobs has just resigned as CEO of Apple Computer. I wish him a speedy and complete recovery from his illness. Below, I am reposting an article I wrote from earlier this year where I suggested a way to increase organs available for transplantation - by encouraging coworkers (in addition to family, friends, and people who worship together at their given Congregations) to donate organs to their fellow coworkers. Are their any Corporate Health Promotion/Wellness Managers who aren't afraid to make waves who would like to champion this idea in their companies? If they look at their costs for paying claims for employees with ESRD/kidney failure who are on dialysis, they certainly should be paying attention.
The original post from Monday, January 24, 2011, is found below:

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.

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 Benefits Manager at Apple may want to seize on the opportunity 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 available for transplantion along with a few of my ideas to improve the situation including intra-company live donor donation programs.

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.