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Proposed Kidney Allocation and Independent Donor Advocate Policies Detrimental to Living Donors

Today we have a guest post by Jane Zill, LICSW on OPTN’s proposed policies now up for public comment:

 

The Board of the OPTN will vote on new allocation principles for deceased donor kidneys in June. These allocation principles will definitely impact living organ donors. I am very concerned about this and believe that we should reach out to OPTN Board members immediately and to the Kidney Committee that sponsored this proposal. We don’t have much information about living donors who develop end stage renal disease. A few years ago it was thought to be only 56 but now a new tally is 324*. Because systematic data collection has never been required we do not have an accurate count or an understanding of the factors that led to organ failure in these people.

 

Also, public comment closes in June on a proposal for Independent Donor Advocacy. While the proposal represents hard work and good faith of the members of the Living Donor Committee, it falls far short of what is considered to be best practice. I believe that the wisest and safest route to go would be to ask HRSA to reverse its 2006 decision that gave the OPTN authority (thus the transplant surgical community) to make policy about living organ donation. The transplant surgical community has a conflict of interest regarding living donors that should preclude them from the ability to make their own policy about how they will care for living donors. Since 2006 their efforts have been very unproductive, while KPD [kidney paired donation] that requires the use of living donors, is gaining traction.

 

We need a National Center for the Independent Care and Advocacy for Living Organ Donors, which is totally apart from the purview of the OPTN or the transplant community. Public comment closes on the proposal about Independent Donor Advocacy in June.

 

PLEASE ADDRESS THESE VERY IMPORTANT ISSUE THROUGH THE PUBLIC COMMENT PROCESS OR BY WRITING TO THE KIDNEY COMMITTEE OF MEMBERS OF THE BOARD. IF ANY WOULD LIKE HELP WRITING THEIR COMMENT, PLEASE LET ME KNOW. IF ANYONE WOULD LIKE TO COLLABORATE TO CREATE A DRAFT DOCUMENT(S) FOR OTHERS TO USE TO MAKE PUBLIC COMMENT, PLEASE LET ME KNOW.

 

Jane

Here is a .pdf of Jane’s public comment  at the OPTN Region 1 meeting in Worcester, MA. –   Public comment; Region 1, 4-13; IDA -1

 

(Check OPTN’s calendar; your regional meeting may be upcoming. They are open to the public)

 

Table that compares models of Independent Donor Advocacy: Best Practices, CMS Final Rule 2007 and OPTN’s current policy: Models of Independent Living Donor Advocacy

 

To submit your own public comment on the OPTN proposals: http://optn.transplant.hrsa.gov/policiesAndBylaws/publicComment/proposals.asp

Also, you can feel free to contact Jane directly, leave a comment here or email me if you’d like more information or to receive a template to submit to OPTN.

 

 

*note: I’ll be posting the most recent living kidney donors waitlisted numbers soon.

Permanent link to this article: http://livingdonorsarepeopletoo.com/proposed-kidney-allocation-and-independent-donor-advocate-policies-detrimental-to-living-donors/

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  1. whatmeworry

    Though I am a kidney donor (samaritan at age 55) and a free-market fan, I found your piece well-argued. Exception — I hope you can add the denominator to those morbidity statistics — surely someone knows how many TPs were done. Need that figure for context.

    I always like to suggest in these forums that TP-folk take a look at the net new number of lives that could be saved by getting government mostly out of the regulation side. One Nobelist’s case for this:
    http://graphics8.nytimes.com/images/blogs/freakonomics/pdf/BeckerEliasOrgans(5-06).pdf

  2. LDPeopleToo

    The problems with all free market arguments is that they minimize (or ignore) the real risks to living donors. These authors contend that living liver donation constitutes “a small” risk to donors, when 40% of liver donors experience complications as a result of their procedure. This is far higher than would be acceptable for any other elective procedure. But because it is ‘life saving’ and because the donor’s risks are considered secondary to the potential benefit to the recipient, these risks are permitted to continue (btw, live liver transplantation currently has no higher success rate than deceased donor liver transplantation).

    The authors also use incorrect and incomplete kidney donor mortality and morbidity statistics in their calculations. This isn’t totally their fault; much of the blame lies with the transplant industry who hasn’t felt it important to collect short or long-term data on living donors’ health and well-being. But it does produce an overly rosy picture of what it means to be a living donor, and an overly low ‘value’ of a living donor kidney.

    That the authors dismiss the findings out of India and Iraq (namely that paid living donors fare badly post-donation), insisting they are not indicative of how a market would fare in the U.S. because the ‘quality’ of care would be higher here, demonstrates the authors’ ignorance of the U.S. transplant industry.

    1. We had NO national standards of living donor evaluation, selection or care until 2013 (nearly 60 yrs after the first living kidney donor transplant).

    2. We had no standards of informed consent until 2013, and even now it is paltry.

    3. Since 2000, transplant centers have been FEDERALLY MANDATED to report one year of follow up on all their living donors, yet a decade later, they ‘lose’ more than 1/3. All they had to report was a ‘patient status’. In other words, they don’t know if more than 1/3 of their LDs are alive or dead one year post-donation.

    4. Even though 20-30% of all living donors experience depression, anxiety, anger, grief, and/or PTSD post-donation, not a single transplant center offers structured aftercare or support services.

    So where exactly is this higher quality?

    Other aspects the authors overlook:

    – Their discussion of deceased donor organs fails to include the viable deceased organs known to be discarded every year because they originate from donors over the age of 50 (See OPTN’s proposed kidney allocation policy changes).

    – They fail to acknowledge that transplants are not cures, but treatments. Most recipients will need multiple transplants to achieve a normal life span. 15% of the wait list at any time has had at least one prior transplant. (So we have to ask ourselves: how many healthy people aka living donors should be compromised for one recipient?)

    – The number of prior living kidney donors wait listed in need of their own kidney transplant has risen from 285 in March 2011 to 324 at the end of 2012, (), a number that will, by all estimates, continue to grow. Encouraging living kidney donation is, in effect, creating a new class of kidney patients.

    All reports from every country with legal or illegal organ sales reveals the paradigm to be great for recipients, doctors, and govts but detrimental for the person relinquishing the kidney. Since 2006, when the authors produced their flawed argument, multiple studies have been published from multiple countries, all with the same result.

    According to USRDS, diabetes accounts for 44% of all kidney failure, and hypertension another 26%. The best way to address the so-called organ shortage is to embark on a robust prevention and treatment program for both. Unfortunately, that approach doesn’t result in media-worthy, attention-grabbing papers.

  3. whatmeworry

    If anyone is following our discussion I will be brief and refer them to Dr Raad’s 2010 refutation of the above ably-presented points: http://dailycaller.com/2010/06/23/a-new-approach-to-organ-donation/ There has been ample discussion of Nobelist Dr Becker’s free-market approach since his 2006 paper, but of course new ideas take awhile to take root. Meanwhile, deaths-by-waitlist have plummeted in countries willing to think outside the box I believe we’re in.

  4. LDPeopleToo

    It’s clear you’re not interested in actually having a discussion about this issue, considering you’ve ignored the role of prevention and treatment, the historical lack of protections and standards for living donor care, and the overwhelming evidence that markets are dangerous and harmful to those who sell/relinquish kidneys.

    As for the link:

    1. Iran didn’t eliminate their waiting list: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1819484/

    2. Soliciting someone’s opinion on a theoretical decision has very little correlation to what someone would do if the real situation arose.

  5. James Myers

    Joan, I would like to know a little more about your positions on this matter. Could you please send me any additional materials that you have. I found the above PDF a little disturbing. Thanks in advance for your time.

    James Myers

  6. LDPeopleToo

    I sent your request to Jane some time ago. Hopefully she got back to you.

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