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

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.

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.