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Author Topic: District Court Judge Assumes Organ Allocation Authority in the U.S.  (Read 7079 times)

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Offline Clark

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"the OPTN to immediately cease application of the Under 12 Rule as to Sarah Murnaghan"
https://www.paed.uscourts.gov/documents/opinions/13D0477P.pdf



7:08 PM EDT, Fri May 31, 2013 Review of U.S. lung transplant policy unlikely to save girl's life
http://www.cnn.com/2013/05/31/health/pennsylvania-girl-lungs/index.html

6/1/13 8:04p HHS Secretary Sebelius Calls for Review of Child Organ Transplant Rules
http://abcnews.go.com/Health/health-human-services-sebelius-seeks-review-transplant-policies/t/story?id=19306090

Jun 1, 2013 1:47p HHS chiefs seeks review of lung transplant policy
http://www.necn.com/06/01/13/Federal-review-sought-of-lung-transplant/landing_health.html?&apID=b5eb76e40f274838b101f9bf4ca86508

22:43 EST, 2 June 2013 'Sarah has been left to die': Parents of 10-year-old girl with cystic fibrosis in need of lung donation plead with public to help save their daughter
http://www.dailymail.co.uk/news/article-2334957/Sarah-Murnaghan-parents-10-year-old-cystic-fibrosis-sufferer-need-lung-donation-plead-public-help-save-daughter.html

June 4, 2013 1:50 PM Sebelius: I Can’t Step Into Girl’s Transplant Case
http://philadelphia.cbslocal.com/2013/06/04/sebelius-i-cant-step-into-girls-transplant-case/

June 5, 2013, 11:56 a.m. EDT Center for Organ Recovery & Education Renews Call for Pennsylvania State Lawmakers to Support Donate Life PA Act   Recent Case of Philadelphia Girl Heightens Need for More Organ Donors across the State
http://www.marketwatch.com/story/center-for-organ-recovery-education-renews-call-for-pennsylvania-state-lawmakers-to-support-donate-life-pa-act-2013-06-05

June 5, 2013 4:37 PM Don’t Politicize Organ Transplantation
http://www.nationalreview.com/corner/350270/dont-politicize-organ-transplantation-yuval-levin

6/5/13 Judge Makes 10-Year-Old Eligible for Donor Lung
http://nation.foxnews.com/2013/06/05/judge-makes-10-year-old-elibigle-donor-lung

June 5, 2013 Governor Corbett Encourages Participation in Organ Donation Program Following Federal Ruling
http://news.yahoo.com/governor-corbett-encourages-participation-organ-donation-program-following-214800054.html?.tsrc=rtlde/

Unrelated directed kidney donor in 2003, recipient and I both are well.
629 time blood and platelet donor since 1976 and still giving!
Elected to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, and Ad Hoc Public Solicitation of Organ Donors Committees, 2005-2011
Proud grandpa!

Offline Clark

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Re: District Court Judge Assumes Organ Allocation Authority in the U.S.
« Reply #1 on: June 06, 2013, 12:05:16 PM »
  Lawyers, is this judge empowered to invoke a temporary restraining order of the Executive Branch? Is a restraining order a tool that can be applied so finely, by enjoining a contractor to eliminate just one of thousands of rules?

  Separately, does this judge think that it can be turned off, just for this individual, immediately? Temporarily? Without adversely affecting anyone else, or, conceivably, everyone else on the waiting list?  There are no news releases from the court, from HHS, or from UNOS.

  My guess is that this is likely to have introduced paralysis at UNOS while lawyers for both UNOS and HHS decide whether to comply, and if so, how. In the meantime, lung allocation will be at a standstill.  Even if there is no delay due to legal wrangling, and all administrators immediately authorize compliance, the change must be coded.  The changed code must be tested.  The tested new code must be incorporated into the existing allocation code. The change must be tested.  This can be done in parallel, so operation of the allocation code can continue during development and testing, but that doesn't comply with the judge's order.  Any allocation done after his order that doesn't include his change violates his order.  This is because none of the allocation rules exists in isolation.

  Each donor candidate is evaluated for recovery of all possible organs and tissues, most going separately to diverse individual recipients, but many going as multi-organ transplants, often heart and lungs together. Even a single change to the complex rule set for one organ for one individual affects all. Does that mean there have been no allocations since yesterday's ruling? If there have, does that mean Secretary Sebelius is not complying with the order? Even if he decides she's not complying with his ruling, what recourse does he have except to stop allocation for everyone, including the child he thinks he's benefited, until the code can be changed? Note that the IT overhaul at UNOS has been ongoing for years and has already cost millions of dollars, not even a majority of which has been funded by HHS.

  Whether or not the judge has the legal authority to make the order he did, it seems he did it without regard for the complexity of the system, nor regard for the established process for change. Even if one agrees with the justification cited, is this an acceptable way to implement change?
Unrelated directed kidney donor in 2003, recipient and I both are well.
629 time blood and platelet donor since 1976 and still giving!
Elected to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, and Ad Hoc Public Solicitation of Organ Donors Committees, 2005-2011
Proud grandpa!

Offline Clark

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June 6, 2013
The Honorable Kathleen Sebelius, Secretary of Health and Human Services
http://optn.transplant.hrsa.gov/ContentDocuments/OPTN_Letter_Secretary_06-06-2013.pdf


OPTN/UNOS Executive Committee approves discretionary listing of pediatric lung transplant candidates
http://optn.transplant.hrsa.gov/news/newsDetail.asp?id=1598
The OPTN/UNOS Executive Committee, meeting by conference call, approved a revision to national lung allocation policy affecting transplant candidates age 11 or younger. The revised policy provides a mechanism for lung transplant programs to request additional priority for these candidates, for whom the transplant team would consider transplanting lungs from an adolescent or adult donor.

...

Development of the New Lung Allocation System in the United States
American Journal of Transplantation Volume 6, Issue 5p2, pages 1212–1227, May 2006
http://onlinelibrary.wiley.com/doi/10.1111/j.1600-6143.2006.01276.x/full

...

US transplant network resists lung rule changes
http://www.boston.com/business/healthcare/2013/06/10/transplant-group-considers-lung-rule-changes/B8Ik2ZaRjrfMKVQyqNEuJI/story.html
The national organization that manages organ transplants on Monday resisted making emergency rule changes for children under 12 who are waiting on lungs but created a special appeal and review system to hear such cases.

The executive committee of the Organ Procurement and Transplantation Network held a teleconference to consider children who seek to qualify for adult lungs, and many members voiced serious ethical and medical concerns about a recent federal judge’s ruling that questioned the existing system.

...

Dr. Steven A. Webber, of the Vanderbilt University Medical Center, said the network’s pediatric committee voted 14-0 not to recommend emergency changes to existing rules.

...

The network said that since 2007, only one lung transplant in the United States has occurred from a donor older than age 18 into a recipient younger than 12.



Girl needing lung makes case for compensating organ donors
http://www.indystar.com/article/20130607/OPINION03/306070098/1002/?nclick_check=1

Pa. girl's family appeals for direct lung donor
http://www.eveningsun.com/statenews/ci_23373506/pa-girls-family-appeals-direct-lung-donor

Lawsuits Aside, U.S. Lung-Donor Policy Works
http://www.bloomberg.com/news/2013-06-07/lawsuits-aside-u-s-lung-donor-policy-works.html

Changing Organ Transplant Rules Might Not Actually Help Children
http://www.businessweek.com/articles/2013-06-07/changing-organ-transplant-rules-might-not-actually-help-children

Local medical experts concerned about organ transplant ruling
http://www.hawaiinewsnow.com/story/22527732/local-medical-experts-concerned-about-organ-transplant-ruling

Ethicists weigh in on pediatric lung transplant case
http://www.usatoday.com/story/news/nation/2013/06/07/lung-transplant-girl-ethics/2397701/

Conservatives Grasp Wrong Stick to Beat Sibelius
http://patriotpost.us/opinion/18535

How You Can Help Sarah and Others Like Her
http://giftofhopeblog.org/2013/06/07/how-you-can-help-sarah-and-others-like-her/

Second child files suit for lung transplant, gets on list
http://vitals.nbcnews.com/_news/2013/06/06/18805140-second-child-files-suit-for-lung-transplant-gets-on-list

Sarah Versus the Data
http://www.psmag.com/health/sarah-murnaghan-versus-the-data-kathleen-sebelius-organ-transplant-59462/

Needed: A conversation on organ donation
http://www.philly.com/philly/blogs/public_health/Needed-A-conversation-on-organ-donation.html

Emotional appeal undermines complexity in child transplant case
http://www.usforacle.com/emotional-appeal-undermines-complexity-in-child-transplant-case-1.2829161#.UbFRxsu9KSM

Judge's ruling challenges US transplant system
http://www.abc3340.com/story/22525595/judges-rulings-challenge-us-transplant-policies

Unrelated directed kidney donor in 2003, recipient and I both are well.
629 time blood and platelet donor since 1976 and still giving!
Elected to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, and Ad Hoc Public Solicitation of Organ Donors Committees, 2005-2011
Proud grandpa!

Offline Clark

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Still more reaction pieces
« Reply #3 on: June 11, 2013, 03:29:29 PM »


Commit to becoming an organ donor
http://citizensvoice.com/news/commit-to-becoming-an-organ-donor-1.1502546
Regardless of how the gut-wrenching saga of 10-year-old Sarah Murnaghan plays out, her case is a reminder of the pressing need for organ donations.

Maybe Sarah Murnaghan Shouldn’t Get a Lung Transplant
http://blogs.phillymag.com/the_philly_post/2013/06/10/sarah-murnaghan-lungs/
Why messing with the rules for allocating organs is a bad idea.

...

I sure hope every one of Sarah’s many, many supporters have signed organ donor cards.
Unrelated directed kidney donor in 2003, recipient and I both are well.
629 time blood and platelet donor since 1976 and still giving!
Elected to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, and Ad Hoc Public Solicitation of Organ Donors Committees, 2005-2011
Proud grandpa!

Offline Clark

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Re: District Court Judge Assumes Organ Allocation Authority in the U.S.
« Reply #4 on: June 24, 2013, 01:22:06 PM »
Opinion > Goss: Organ-transplant process is complex for a reason
Many factors must be weighed in selecting the right recipient
By Dr. John Goss
http://www.chron.com/opinion/outlook/article/Goss-Organ-transplant-process-is-complex-for-a-4599192.php

Federal court hearing on hold over lung transplant rules after Pa. girl, 10, gets adult lungs
Article by: MARYCLAIRE DALE , Associated Press Updated: June 14, 2013
http://www.startribune.com/lifestyle/health/211543601.html

New York, step up and donate organs
Our state has a low donor participation rate — and hundreds of people who die waiting every year
By Helen Irving
https://www.nydailynews.com/opinion/new-york-step-donate-organs-article-1.1373018

UNOS: Parents of pediatric lung candidate plea for change to policy—Related News & Statements JUN 13, 2013
http://transplantpro.org/parents-of-pediatric-lung-candidate-plea-for-change-to-policy-related-news-statements/

UNOS: Important Policy Notice to Transplant Professionals 06-11-2013
http://optn.transplant.hrsa.gov/ContentDocuments/Policy_Notice_06-2013.pdf

OPTN: Revised Lung Allocation Policy
http://optn.transplant.hrsa.gov/PoliciesandBylaws2/policies/pdfs/policy_9.pdf

Summary of actions taken at June 10, 2013, OPTN/UNOS Executive  Committee Meeting
http://optn.transplant.hrsa.gov/ContentDocuments/Policy_Notice_06-2013.pdf

OPTN President's Letter to Secretary Sebelius 06-06-2013
http://optn.transplant.hrsa.gov/ContentDocuments/OPTN_Letter_Secretary_06-06-2013.pdf

OPTN Statement regarding lung transplantation and pediatric priority MAY 27, 2013
http://transplantpro.org/optn-statement-regarding-lung-transplantation-and-pediatric-priority/



Rule Change May Not Save Dying Child, But You Could
By Robert Cooper | June 11th 2013
http://www.science20.com/caution_pondering_scientist_ahead/rule_change_may_not_save_dying_child_you_could-114547

Transplant outrage has a solution: more organ donors
JoNel Aleccia, Senior Writer, NBC News June 9, 2013
http://www.nbcnews.com/health/transplant-outrage-has-solution-more-organ-donors-6C10256564

“I COULD NOT PRAY FOR SARAH MURNAGHAN”
A doctor's perspective on 10-year-old Sarah Murnaghan's lung transplant
Posted by Jennifer Chalfin Simmons, M.D., F.A.C.S. on 6/13/2013
http://blogs.phillymag.com/bewellphilly/2013/06/13/i-pray-sarah-murnaghan/

Unrelated directed kidney donor in 2003, recipient and I both are well.
629 time blood and platelet donor since 1976 and still giving!
Elected to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, and Ad Hoc Public Solicitation of Organ Donors Committees, 2005-2011
Proud grandpa!

Offline Clark

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Re: District Court Judge Assumes Organ Allocation Authority in the U.S.
« Reply #5 on: June 24, 2013, 01:30:30 PM »

American Society of Transplant Surgeons (ASTS) and American Society of Transplantation (AST) statement:
http://www.asts.org/docs/default-source/position-statements/asts-ast-statement-on-lung-allocation-policy-june-6-2013.pdf?sfvrsn=4

Lung transplant reignites debate in Oregon over ethics of organ donation
By Soumya Karlamangla June 12, 2013
http://www.oregonlive.com/health/index.ssf/2013/06/post_65.html

Gift of Life Donor Program Encourages Public, Legislators to Act Now to Help End the Wait
http://www.donors1.org/about-us/media/press1/actnow/

Unrelated directed kidney donor in 2003, recipient and I both are well.
629 time blood and platelet donor since 1976 and still giving!
Elected to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, and Ad Hoc Public Solicitation of Organ Donors Committees, 2005-2011
Proud grandpa!

Offline Clark

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Re: District Court Judge Assumes Organ Allocation Authority in the U.S.
« Reply #6 on: June 25, 2013, 12:04:45 PM »
Sarah Murnaghan awake and responsive after lung transplant
http://fox43.com/2013/06/24/sarah-murnaghan-awake-and-responsive-after-lung-transplant

Improving Lung Donor Availability and Allocation—Without the Courts
http://newswise.com/articles/improving-lung-donor-availability-and-allocation-without-the-courts

EDITORIAL: Science and sympathy
http://www.toledoblade.com/Editorials/2013/06/24/Science-and-sympathy.html

Turning Wrong Into Right: The 2013 Lung Allocation Controversy
https://annals.org/article.aspx?articleid=1699958
Unrelated directed kidney donor in 2003, recipient and I both are well.
629 time blood and platelet donor since 1976 and still giving!
Elected to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, and Ad Hoc Public Solicitation of Organ Donors Committees, 2005-2011
Proud grandpa!

 

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