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Author Topic: Free Seminar in NYC: The Shortage of Available Organs and Public Health Policy  (Read 5513 times)
okarol
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Photo is Jenna - after Disneyland - 1988

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« on: April 03, 2010, 10:59:23 PM »

Transplantation in the USA: The Shortage of Available Organs and Public Health Policy
Free seminar

Jonathan A. Winston, M.D., Program Chair
Monday, April 19, 2010
The Paley Center for Media, 25 West 52nd Street, NYC
Reception: 6:00pm • Program: 6:30 - 8:30pm

    There are over 100,000 people on the national transplant wait list, and most wait for kidneys. The organ shortage crisis and recent events surrounding the underground market for organs begs us to explore current practices in organ allocation, incentives for organ donation, and how health care policies evolve.

    Kidney & Urology Foundation of America (KUFA) is hosting a timely and compelling seminar, bringing together a diverse panel of thought leaders in the organ donation, transplantation, and health care policy arenas on Monday, April 19th at The Paley Center for Media, 25 West 52nd Street, between 5th and 6th Avenues, New York City.

    Please join us for a Reception at 6pm and Program at 6:30pm. If you are a kidney or transplant patient, physician, transplant coordinator or other patient care professional, health policy expert or legislator, ethicist, patient advocate, media representative, or an interested member of the community, you won’t want to miss this forum on the current state of transplantation in the USA and possible changes to the transplant landscape.

    Speakers:

        * David J. Cohen, M.D., Professor of Clinical Medicine; Medical Director, Renal Transplantation, Columbia University Medical Center, New York, NY; Member, Board of Directors and Chair, Public Policy Committee, American Society of Transplantation. The current clinical practice of transplantation: organ allocation, the current transplant wait list, and how organ allocation policy evolves.
        * Nancy Scheper-Hughes, Ph.D., Chancellor’s Professor in Medical Anthropology, Head, Doctoral Program in Medical Anthropology, Critical Studies in Medicine, Science and the Body, University of California at Berkeley; Director, Organs Watch. Historical perspectives on organ shortages, the 'underground' market for kidneys, and current issues in the U.S. regarding the sale of organs
        * Alex Tabarrok, Ph.D., Bartley J. Madden Chair in Economics at the Mercatus Center and Associate Professor of Economics , George Mason University, Fairfax VA; Director of Research, The Independent Institute, Oakland, CA. The economics of incentive programs to increase organ availability in the US.

    Moderator:

        * Jonathan A. Winston, M.D., Associate Professor of Medicine/Nephrology, Mount Sinai School of Medicine

    Registration is FREE. Light refreshments will be served. RSVP required.
    Space is limited. Reservations will be accepted on a first come, first served basis. Travel grants available for local patients. Please inquire.
    To Register By Phone:
            Carol Brower, Program Director: 732.866.4444 or
            Heather Reel, Program Associate: 1.800.63DONATE (36628) or 212.629.9770

http://transplantusa.kidneyurology.org/
Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Meinuk
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« Reply #1 on: April 27, 2010, 10:57:49 AM »

Thanks to you Karol, I went to this. 

It was a GREAT program.  I am writing about it in three parts over on Bill Peckham's Blog: Dialysis from the sharp end of the needle.
http://www.billpeckham.com/from_the_sharp_end_of_the/2010/04/notes-from-transplantation-in-the-usa-part-one-successes-and-challenges.html

Here is the first post:

Notes From Transplantation in the USA: Part One Successes and Challenges
By Anna Bennett

The Kidney and Urology Foundation of America hosted a program last Monday: Transplantation in the USA: The Shortage of Available Organs and Public Health Policy:

There are over 100,000 people on the national transplant wait list, and most wait for kidneys. The organ shortage crisis and recent events surrounding the underground market for organs begs us to explore current practices in organ allocation, incentives for organ donation, and how health care policies evolve.

See NephrOnline coverage here.

It was my intention to attend this program and write a simple recap for DSEN. As I sat in the audience at the Paley Center for Media, all hope for an unbiased recap was lost. Instead, what I found was a diverse group of presenters who challenged my thoughts and opinions, and in two cases, reassured me that there are amazing professionals working in the field today. I am writing these as a series of posts.  This is the first: Successes and Challenges in Transplantation 2010.

After a warm welcome by Jonathan A. Winston, M.D., Program Chair and Moderator. There were greetings and mutual respect for an audience full of transplant professionals, transplant families and State Health Workers.

The first speaker was David J. Cohen, M.D. Professor of Clinical Medicine; Medical Director, Renal Transplantation, Columbia University Medical Center, New York, NY; Member, Board of Directors and Chair, Public Policy Committee, American Society of Transplantation.

Dr. Cohen's presentation Kidney Transplantation in the US 2010: Successes and Challenges, was direct, full of current statistics, and had plenty of suggestions to improve the current system. Dr. Cohen talked about problems in the system that laypeople usually never hear about. The disparity in practice between transplant centers. There is no uniform protocol, there is government mandated uniform reporting, buy centers can pick and choose how aggressive they are when it comes to procedures. Do they push for extended criteria kidneys? Do they push for paired donation? Or do they strictly stick to the UNOS and living related donors? Dr Cohen really highlighted the under-tapped resource of paired donations, and he stressed that this is solely in the purview of the individual center. There is no national or regional system. In his center, they do the matching by hand and they assess the cases on an individual basis. My question, wouldn't a regional registry help? But Dr. Cohen notes that then, you would be asking people to wait.

Dr. Cohen also spoke about the reality of transplant being rationed medical care. The fact that only 20% of people in CKD5 are listed for a transplant. He posited that there were possibly 100,000 dialyzors (which would be about 25%) who could be listed, but for some reason are not. Dr. Cohen also stated that 30% of those on the UNOS list have significant levels of antibodies, extending their anticipated wait time. (My take: and thus, skewing the wait time average)

Dr. Cohen also used another phrase that I would like to point out: A transplant center's "Discard Rate": organs that go unused, for whatever reason. After listening to Dr. Cohen, seeing his slides and numbers, it's clear that there are gaping holes in the current system. These can be fixed, numbers can be brought up dramatically by simply fixing what already exists. With better organization, better communication and more informed patients.

He concluded on a hopeful note - by discussing some of the cutting edge protocols that are on the horizon for lowering PRA.

2010 is indeed a time of great success for renal transplant, and it is also a time of great challenge, because as long as inroads are made, the demand will rise for those who are eligible and desiring a kidney transplant.
« Last Edit: April 27, 2010, 10:59:51 AM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
okarol
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Posts: 100876


Photo is Jenna - after Disneyland - 1988

WWW
« Reply #2 on: April 28, 2010, 12:43:43 AM »

 :2thumbsup; Great! I look forward to reading more!
Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Meinuk
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Gender: Female
Posts: 891


« Reply #3 on: April 28, 2010, 07:01:36 AM »

Part Two was published today.

http://www.billpeckham.com/from_the_sharp_end_of_the/2010/04/notes-from-transplantation-in-the-usa-part-two-using-incentives-in-organ-donation.html

Notes From Transplantation in the USA: Part Two Using Incentives in Organ Donation

By Anna Bennett

This is Part Two (part one) of a three post series on Transplantation in the USA a program given in NYC on April 19th 2010 by the Kidney and Urology Foundation of America.

Paying for organs has been discussed before on DSEN. I have firmly taken a stance that opposes creating an organ market here in the United States. That being said, the discussion is on the table and both sides have the mic.

The second speaker of the evening was Alex Tabarrock, Ph.D.: Bartley J. Madden Chair in Economics at the Mercatus Center and Associate Professor of Economics , George Mason University, Fairfax VA; Director of Research, The Independent Institute, Oakland, CA.

Dr. Tabarrock presented his studies showing that economic incentive is the way to cure the organ shortage. He even quoted Adam Smith (pretty safe bet for an economist). It was when Dr. Tabarrock started extolling the virtues of the Iranian system that he raised my ire. Seriously? He was using Iran as an example of a robust and functional organ market? He did. Really.

My favorite moment though was when he said that other medical/organ donations were already being compensated. His example: When you donate your body to science, they give you a free cremation after they are done. I almost laughed out loud on that one. What are these centers going to do? Ship the body parts back home? Of course the donated body would be cremated (hint Dr. Tabarrock, unclaimed bodies in NYC are cremated for free as well).

Obviously, I do not agree with Dr. Tabarock or the whole school of thought "Why can't I buy a kidney if I can afford it? It's the American way." There have been posts here on DSEN and all over the internet about the subject, it is polarizing and controversial. I cannot write unbiasedly about it. There seems to be two schools of thought, one of individual rights (Dr. Tabarrock's camp) and Society (my position). Dr. Tabarrock cited Israel and their compensation for deceased donors. I would agree that is a program worth watching closely. Deceased donors cannot be coerced or manipulated, they are not desperate.  He also cited the State of Pennsylvania creating a trust to compensate deceased donor families. He stated that the fund was established, but never used for fear of public backlash.

This is such a polarizing subject, and debate can easily devolve, and has.  My suggestion is that we watch and wait, and while we are doing that, let's fix the holes in the current system.  Because, before we create a whole new administrative and ethical nightmare with any form of compensation for donors (other than medical expenses) we have a lot of work to do. There is so much room for improvement in our system right now.  It is my opinion that Dr. Tabarrock's time, education and energy could be of use to the CKD community in a much more advantageous and practical way, rather than pick a morally gray area and try to grandstand upon it.
Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
Meinuk
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« Reply #4 on: April 29, 2010, 05:02:46 PM »

Part Three

http://www.billpeckham.com/from_the_sharp_end_of_the/2010/04/notes-from-transplantation-in-the-usa-part-three-organ-trafficking-here-and-now.html


Notes From Transplantation in the USA Part Three: Organ Trafficking Here and NOW

By Anna Bennett

This is Part Three  (parts one & two) of a three post series on Transplantation in the USA a program given in NYC on April 19th 2010 by the Kidney and Urology Foundation of America.

There is a HUGE disservice being done by the advocacy world to those in CKD5.  Why is organ donation always conflated with an Organ Market?  Paying an altruistic donor's medical bills is expected, it should be a given. Ensuring that a donor is not discriminated in future medical care, that too should be a given.  Missed work/recovery - well, that is a debate. I am ok with it, as long as it does not enrich the donor. The disservice is done by promoting travesties such as the Iranian Paid Donor System as optimal (as Dr. Tabarrock did).  It is that kind of example that just detracts from what can be done to help.  Citing a country with KNOWN human rights abuse removes all credibility and made Dr. Tabarrock an easy target for the final speaker of the evening, Dr. Nancy Scheper-Hughes, Ph.D., Chancellor’s Professor in Medical Anthropology, Head, Doctoral Program in Medical Anthropology, Critical Studies in Medicine, Science and the Body, University of California at Berkeley; Director, Organs Watch.

My first reaction, WOW! It was fortuitous that the she spoke right after Dr. Tabarrock, she easily refuted his citation of Iran being a good example of an Organ Market. She has actually had graduate students working in Iran, unbiased people who have seen the atrocities and abuse first hand. This woman brought it all into perspective for me. Her research is on Organ Trafficking.

Dr. Scherper-Hughes is well versed in CKD and the unique entitlement that guarantees that we in the United States with CKD5 receive treatment. Entitlement is the key word here. If we paid into the system or are a child, we are guaranteed renal replacement in the form of dialysis or transplant and the government will pay for it. The Medicare ESRD Entitlement is a unique program, in this regard, Americans with CKD5 are very, very lucky.

Dr. Scheper-Hughes talked a bit about the history of the Medicare entitlement and the original Seattle "Life or Death" Committees. Dr. Scheper-Hughes spoke for a long time, and many in the audience were uncomfortable. It is tough to sit in the pristine Paley Center Screening Room, just off Fifth Ave in NYC, and be faced with the realities of Organ Trafficking. Those reception canapes paid for by big pharma don't sit too well when Dr. Scheper-Hughes points out that trafficking exists here in NYC - all over the USA actually - she gave us places and names, and slides of the traffickers.

Currently, one Trafficking Ring is flying in Moldovian Peasants to the USA to be paid donors.  The National Organ Transplant Act (NOTA) is the law that covers against paid donation has been on the books since 1984 (and then amended in 2008).  As of today there have been no prosecutions citing the act.  District attorneys are not enforcing it. Dr. Scheper-Hughes has been working with the FBI and various embassies, trying to stop this exploitative practice, and so far, nothing has come of it.  When she spoke to the Moldavian Embassy, their reply was (I am paraphrasing) "So, that's why so many were applying for visas".

I hope that we'll be hearing more from Dr. Scheper-Hughes, we need to be reminded that desperation can lead to exploitation.  There are better answers out there than buying a kidney on the organ black market.  Nephronline noted in their quote of the day (which, if memory serves, was said during the Q&A - when Dr. Scheper-Hughes was trying to see a solution to the desperation):

        "Due to the huge shortage in available organs, a sense of desperation has set in, driving the current practice of organ trafficking. There are penalties for buying, selling and brokering the sale of organs in this country, but still it goes on, often with an attitude of 'don't ask, don't tell.' I believe that if the laws are not going to be followed, then the laws should change. First, though, a controlled study must take place, in an ethical manner, with a sample of volunteer organ donors being compensated appropriately."

        —Nancy Scheper-Hughes, director of Organs Watch and an expert on organ smuggling at the Kidney & Urology Foundation of America transplant conference.


On a personal note: I want to thank Karol Franks (OKarol) over at IHD for posting about this program (that is how I found out about it). Karol is an AMAZING woman, and her dedication to those with CKD is a shining example for all of us. I want to thank KUFA (the Kidney and Urology Foundation of America) for putting on the program. I wish they did more for those 80% of people with CKD5 who are on dialysis with no transplant in their future. But I see that there is high drama in transplant. I'll admit, it is shocking to see the scars of the Brazilian mental patients who were kidney donors. What I'd like to see is some of that passion go into promoting HDHD. I'd like to see more examples like Bill, Peter and Harvey et al, showing that life does not stop with dialysis.
Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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