U.S. - UNOS - FAIR - new Presumed Consent Opt-Out Nat'l Organ Donor System

[Guest guest]

The email letter I sent upset appalled of U.S. importing - exporting - organ exchanges between countries was not sent to UNOS. I sent it to a nat'l advocate non-profit organization fellow directly with the strengths people organizations power to make the much necessary and fastest changes for better in fair heath care funding research etc.... and for betterment of UNOS our nations organ donor systems transplant programs in severe crises and betterment for us all.

A single persons voice personal letter expressing their own problems and within the systems gets lost within those systems and looked at as only 1 person not for the majority of people. Progress for change solving your own personal problems can happen but will not implement total changes in systems laws bylaws and solving those systems problems for all the people and on a nat'l basis and systems.

It takes the participation of each and every 1 of us combined as 1 voice backing of a large or largest majority of the people acting as 1 with forceful powerful large non-profit organizations - medical organizations - Dr's - hosp's - boards - those organizations delegates backing willing to go all the way to D.C. speaking for all of us over and over again until they get the jobs done passing laws for changes for betterment in health care - fair allocations in medical research funding spending tx's cures for the most dire dx's diseases with highest lost of life loss of quality of life including HCV that U.S. spends the least amount on - new organ donor systems a fix for the dire shortages of organ donors already worked out ready to go into place very simply and cheaply just needs the laws passed and for fair allocation of donated organs nat'l across

the board across states and transplant regions equally for everyone.

There is no fair and equatable organ donor - allocations - transplant national systems in place in this country. Just like each individual state governs themselves different laws per state so it is for organ donations - allocations - transplant - listing - who gets transplanted and when with each transplant region team governing themselves. The U.S. is set up in organ transplant regions. Each state region transplant team has the power to pick and choose and choose to share donated organ scarce livers across state lines across transplant regions to only other teams they pick and choose or not within safe liver transplant time lines to the most in dire need shortest time to live or not.

We in esld are in dire need can't wait for better changes work the best we can within our own teams and can now only put our lives hope faith trust in them and pray to whatever God or Gods we worship.

That's the link I posted and now opened up because some people members do have problems with links and settings on their computers. Also below 2 non-profit organization to read about for betterment advocacy all our voices as 1 for change now for all of us again. If direct links don't work for you copy and paste the web addresses or simply type it in your web search windows.

FAIR and Presumed Consent Opt-Out Organ Donor System organizations those 2 other sites are excellent reading and covers much more than how little medical funding research is allocated spent on HCV and how our voluntary organ donor system that is know does not can not work for the majority of all pt's listed is left in place because of politicians UNOS fear of change.

These 2 organizations have saved the lives of many many people.

I'm physically constantly fatigued total body my time online will be decreasing running out in time. I don't do this for me but for as many people as possible members and nation wide. I have posted these same links this info for years now and very few comments from members and not even 1 private email asking for more information or how it works or has worked for the people.

People better start reading posted INFO: medical articles and saving them too. I totally understand how overwhelming bad it all can be been there myself and now back again. Don't rely on the correct medical info pertaining to you all medical info for you by simply asking members research it all learn keep learning your own medical dx's conditions prognoses ask talk with your own Dr's ask ALL your ?'s for about you than share ask ?'s of us in general and for our understanding and support.

Yes we become very overwhelmed with our own medical dx's prognosis and can miss out on the very medical information articles posted help and support from us that is most needed by us.

We hardly receive any ?'s feed back reply from messages INFO medical articles in plain language pertaining to general serious aspects of HCV liver disease - Why ???? Fear ?????

In every message reply we post to members has much helpful information full explanations we write not just for that member but for all of us to learn understand in all stages why we explain it and in so much details for everyone to learn.

This is all in general statements not at or to anyone or any single member. A wake up call IF needed being offended insulted by such statements the truths gets us nowhere but close minded and in deeper trouble. We can discuss it all here all stages all problems all fears all concerns in respectful adult discussions. Each person has their own priorities in life problems opinions concerns but HCV and related liver disease all related medical conditions follows a usual natural disease pattern. It's each 1 of us the individual with their own set of medical problems their own HCV progressions or not tx's or not clearing or not that needs to be shared by as many members as possible for their own support and information and support of us all.

The power for betterment in health care organ donor system fix fair allocations and in medical research funding takes each and every 1 of us as many as possible to force those changes laws have our voices us represented before congress D.C. they even do as far as the white house and for everyone.

All The Best To Everyone

Love and Hugs to All

Deb

http://fairfoundation.org/organdonation/contactcongressfororgandonation.htm

Template Letter in favor of Pilot Studies to reverse America's organ-donor crisis with Financial Incentives and Presumed Consent

Note: portions of this petition-letter regarding "Financial Incentives" and Presumed Consent were prepared utilizing language from an original template letter by Darling, DDS, (rdarling1@...) and the American Liver Foundation’s organ-donor Resolutions. Those Resolutions and factual links are at the bottom of this page.After you copy the letter that you see below with your edits as desired, just type your zip code into the box and click on the "go" button. Then, when you get to the Congress.org site, you access an email to the President Bush or your Congressional or state legislator using "Contact via web form" or their given email address and the last option once there is "Compose your own

letter." Click on "Next Step" and paste in your letter. You will be given the option to delete text at the bottom if it exceeds their limit. Thank you for being an advocate for pilot projects of new organ donor policies to help save the lives of almost 100,000 people waiting for the "Gift of Life"!

Enter as "Subject": New organ donor policies needed to reverse America's crisis

Then copy and paste from below:Almost 100,000 dying patients are waiting for an organ today. One of them, or one who was taken off the list due to being too sick, dies every hour. Two million-five hundred thousand people die every year in the USA, yet a total of only 14,400 living and deceased persons donated organs last year. Clearly, "altruism" is failing to meet the demand for organs and failing to end this organ-donor crisis.We are urging policy makers to begin pilot projects, in various states, of new models of consent for organ donation, including financial incentives and "Presumed Consent" (PC).

"Financial incentives" would proceed as follows: in a government regulated system, living donors and deceased donor families would be offered their choice of the following incentives should they agree to donation: $50,000 cash payment or a decade of medical insurance (Medicare) or a $50,000 tax benefit. In the case of the living donor, all hospital expenses of surgery and follow-up care would be provided and he/she would be reimbursed for lost wages if employed. It should be noted that 45 million Americans are without medical insurance and 79 million have medical bill or medical debt problems.

Can a person "buy" an organ? No. Who pays the $50,000? Insurers. Sixty percent of transplants are kidneys. Each patient taken off of the kidney waiting list saves up to $400,000 for the payers [Medicare (60%) or private insurance companies]. A deceased donor who provides two kidneys would save these payers between $400,000-$800,000.

On 3/31/08 in an article (written on behalf of himself and not the expressed views of any of the organizations he serves) in the Los Angeles Business Journal, Mone publicly endorsed small scale trial projects to incentivize kidney donation with the government providing health insurance to a living donor. Mone is CEO of OneLegacy, the largest non-profit organ procurement organization in the USA. He is also President of the Association of Organ Procurement Organizations, and is a Director at UNOS. Note that when the National Organ Transplant Act (NOTA) was passed in 1984 to prevent payment for organs, our government (i.e. UNOS) had no waiting list and it was not until 1989 that one was started---it reached only 19,095 patients by 12/31 of that year. The Presumed Consent (PC) motto is, “Your Choice First.” Every American’s wish will be honored as follows: extensive publicity will notify all citizens that they will be presumed to be an organ donor and that if they object, they may "opt-out." PC is in effect in over 20 countries. The AMA and British Med. Assoc. have voiced support for PC and two reports by the AMA's Council on Ethical and Judicial Affairs recommend that "physicians should encourage and support properly designed pilot studies... that investigate the effects of [PC]." The HHS Advisory Committee on Organ Transplantation recommended a pilot study of PC to involve 4-5 states. Existing Presumed Consent bills are presently being evaluated for introduction into the Delaware, Nevada and

California legislatures.

California is signing up new organ donors with its online Donate Life Registry at the rate of 1.5 million a year. There are 34 million adults in CA, thus 20 years to sign up all. With PC and the stroke of a pen, everyone is signed up immediately except for those who opt out. New organ donor policies would not only provide more organs, but they would also reduce the need for split liver transplantation, artificial organs, and xenotransplantation. Some believe Congress will never pass new organ-donor policies. We'll never know unless we try and we owe it to all 99,400+ to start debating these policies. As transplant surgeon, Adela Casas, MD, said, "I think it will be a hard road but a battle worth fighting for."

Please join with us and come out publicly for pilot projects of these new OD policies in your speeches and publications and by voicing your strong support to your peers.

Thank you for your time and consideration.At the Loma University Medical Center Transplant Institute:-- Okechukwa Ojogho, M.D., Member, ASTS, Director, Transplantation Institute; Associate Professor of Surgery-- Pedro Baron, M.D., Member, ASTS, Director of Pediatric and Adult Liver Transplantation; Associate Professor of Surgery-- Zeid Kayali, MD, MBA, Hepatologist; Medical Director of Liver Transplantation-- Swabb, M.D., Board Certified in Internal Medicine, Board Certified in Nephrology-- Jill Weissman, Pharm. D., Transplant Pharmacist, Loma University Medical Center-- A. Nofrada, RN CCTN (Certified Clinical Transplant Nurse)-- Leigh Aveling, DMin., MFT, Chaplain and Associate Professor, School of Religion

At Stanford University School of Medicine:-- Waldo Concepcion, MD, Member ASTS, FACS; Chief of Clinical Transplantation, Chief of Pediatric Kidney Transplantation, Associate Professor of Surgery, Stanford University School of Medicine.

At Scripps Green Hospital, La Jolla, CA-- Hillebrand, M.D., Hepatologist; Medical Director, Liver Transplantation At the University of South Dakota, Sanford School of Medicine, Sioux Falls, SD:-- Adela T. Casas-Melley, M.D., ASTS, Pediatric/Transplant Surgeon, Sanford Children's Specialty Clinic; Associate Professor-Academic Faculty; Member, Editorial Board, Transplant Chronicles At the Nazih Zuhdi Transplant Institute at INTEGRIS Baptist Medical Center, Oklahoma City, Oklahoma:-- Nicolas Jabbour, M.D., Member, ASTS, Medical Director At the Cleveland Clinic:-- J. Fung, MD, PhD, FACS, Chairman of the Department of General Surgery and Director of the Transplant Center. At the E. Starzl Transplantation Institute, University of Pittsburgh Medical Center:-- M. Planinsic, MD, Director of Hepatic, Intestinal and Multivisceral Transplantation Anesthesiology

At the VA Pittsburgh Healthcare System-- Cacciarelli, M.D., Chief, VA Pittsburgh Healthcare System Liver Transplant Surgery Program At the University of California – Medical Center:-- Lorenzo Rossaro, M.D., Medical Director, Liver Transplant Program, Chief of Gastroenterology and Hepatology

At the University of Southern California Hospital, Los Angeles, CA:-- Yasir A. Qazi, M.D., Medical Director, Kidney-Pancreas Transplant-- Kianoush Banaei-Kashani, M.D., Keck School of Medicine of USC, Division of Nephrology-- Jay Vidhun, M.D., Dept. of Nephrology, Kidney Transplant

At the California Pacific Medical Center:-- G. Gish, MD, Medical Director Liver Transplant Program; Chief: Division of Hepatology and Complex GI; Member of the American Association for the Study of the Liver, the American Gastroenterological Association, the American Society of Transplant Physicians, and the International Liver Transplant Society

At the NYU Medical Center (New York University School of Medicine & Hospitals Center):-- Teperman, MD, Associate Professor, Chief and Director of Transplantation Surgery; Member: UNOS Liver & Intestine Committee, Member, Board of Directors: American Liver Foundation, New York Regional Transplant Program and Latino Organization for Liver Awareness

-- Phil Berry, M.D., Advisory Committee for Organ Transplantation (ACOT) appointed by Secretary Tommie , Health & Human Services, 2001-2004; Past President, Texas Medical Association; President, Texas Medical Assoc. Foundation

-- Leonard J. Morse, MD; Commissioner of Public Health, Worcester, Massachusetts; Professor of Clinical Medicine and Family Medicine and Community Health, University of Massachusetts Medical School; Chair Emeritus, AMA CEJA; Past-President, Mass. Medical Society (Presumed Consent support pursuant to AMA Opinion 2.155)

-- ph Beezy, MD, Member House of Delegates: California Medical Association, Emergency Physician: Kaiser: Panorama City, CA

-- N. Eustermann M.D. FACS; Board Certified General Surgeon; Diplomat, American Board of Surgery; Fellow, American College of Surgeons; Medical Director

-- Sally Satel, MD, Staff Psychiatrist, Oasis Drug Treatment Clinic, Washington, D.C.; Resident scholar, American Enterprise Institute; Coauthor of One Nation Under Therapy and author of PC, M.D.

-- Diane Furchtgott-Roth, former chief economist, U.S. Department of Labor; senior fellow, Hudson Institute

-- J. Goodacre, DDS, MSD; Dean of the School of Dentistry, Loma University; Past President, American Board of Prosthodontics; Board Member, American College of Prosthodontists; Redlands, CA

-- Darling, DDS; Past National Public Citizen of the Year (NASW); Author: Coma Life, an autobiographical memoir of three liver transplants

-- Terence McCarthy, President and Founder; Dave , Vice President and Director of Public Relations; The Presumed Consent Foundation-- Bill Remak, Chairman, California Hepatitis C Task Force; Secretary, National Association of Hepatitis Task Forces; Member, Board of Directors of the Pharmacy Council on Hepatitis and Liver Disease. -- Ralph H. Treiman, Past-President, American Liver Foundation, Greater Los Angeles Chapter

-- Debbie Delgado Vega, Founder, President and CEO, Latino Organization for Liver Awareness (LOLA) -- Steve Calandrillo, Professor of Law & Washington Law School Foundation Scholar, University of Washington School of Law, H. Gates Hall, Seattle, WA -- Harold Kyriazi, Ph.D., Department of Neurobiology, University of Pittsburgh School of Medicine, Pittsburgh, PA; Founder: AHCSIOS (the Ad Hoc Committee for Solving the Intractable Organ Shortage; website www.ahcsios.org) -- Tabarrok, Associate Professor of Economics, Deptartment of Economics, Mason University; Research Director, The Independent Institute; Research Fellow, Mercatus Center -- more concerned citizens in favor of pilot projects of new OD policies are listed here.

Mone's article and subsequent discussion with him by Dr. Darling regarding incentivizing living kidney donation with governmental health care insurance may be accessed here.

The policy of governmental and insurer reimbursement to living kidney donors was originally derived by the public announcement/support of this new OD policy by Arthur J. Matas, MD, who is professor of surgery, Director of the Renal Transplant Program at the University of Minnesota and former President of the American Society of Transplant Surgeons. Dr. Matas CV. Dr. Matas informatively answers questions on ABC News.

A portion of this letter was prepared utilizing language from the American Liver Foundation's resolutions: http://www.liverfoundation.org/about/advocacy/organdonationpolicy/

The Presumed Consent Foundation http://www.presumedconsent.org/membrshp.htm Donation benefits as proposed by many eminent professionals and citizens, including Mr. DeVos, heart recipient and co-founder of Amway: http://fairfoundation.org/organdonation/donation_benefits.pdf USA organ-donor waiting list http://www.optn.org/. One dies every hour here. AMA CEJA Opinion 4-1-05 is at http://www.ama-assn.org/ama1/pub/upload/mm/369/ceja_opinion_2_155.pdf Opinion 7-A-05 http://www.ama-assn.org/ama1/pub/upload/mm/369/ceja_7a05.pdf. AMA Opinion 2.155 is referenced in the former. The Lancet is the European counterpart of the American Medical Association's "Journal of the American Medical Association." A 6/8/07 Editorial in the LANCET states, in part, "“…although ethically and morally suspect, the case for legalising and regulating the commercial sale of human organs may appear to have the upper hand." Full Editorial is here: http://fairfoundation.org/organdonation/LANCET.htm The British Medical Association's support for PC and endorsement of PC by Britain's Chief Medical Officer is at http://fairfoundation.org/organdonation/BMA_on_Presumed_Consent.pdf In regards to the debate over Donation Benefits to a deceased donor family, it may be noted that companies such as Genzyme Biosurgery, LifeCell, LifeNet Health and others are expected to have gross revenue of over $200 million dollars by 2012. Their business is providing human cells, tissues and organs for transplant. Full story. Some of UNOS’s organ procurement organizations are also now entering this lucrative business. Is it ethical to allow businesses and OPO’s to profit/receive financial gain from patients' cells, tissues and organs, while patients and their families are not allowed the same benefit? When the National Organ Transplant Act was passed in 1984 to prevent payment for organs, UNOS had no waiting list and it was not until 1989 that one was started---it reached only 19,095 patients by 12/31 of that year. With close to 100,000 dying souls now waiting, can we morally justify preventing patients and their families from donation benefits while others reap substantial profits from their body organs, tissues and cells?

The Presumed Consent Foundation, Inc. The mission of the Presumed Consent Foundation is to make lifesaving or life enhancing Organ Transplantation available to all who need it. To this end we will work to educate the public about the shortcomings of the current Organ Donation system in the U.S.; be an advocate for

changing the system to Presumed Consent with the right to opt-out; and carry out ongoing programs of Donor Awareness education. http://www.presumedconsent.org/solutions.htm

The FAIR Foundation The FAIR Allocations In Research Foundation - Introduction: The FAIR Foundation was formed because of the inequities in disease research spending by Congress and the National Institutes of Health (NIH). Our Mission: fair and equitable distribution of research funds by our government for all diseases. A disease’s mortality rate shall be given emphasis in determining allocations, and other secondary factors shall be utilized to insure diseases that cause great suffering but have low mortality rates will also receive significantly increased funding. http://www.FAIRFoundation.org