Re: Transplantation - Organ Donation and Recovery Improvement Act (ODRIA) of 2004 - Please read Thank You, Deb

[Guest guest]

<http://www.medscape.com/viewarticle/480470

Enactment of the Organ Donation and Recovery Improvement Act (ODRIA) of 2004

The ODRIA of 2004,[10] signed into law by President W. Bush on April 5, 2004, is the first federal legislation since 1990 amending the NOTA. Instead of tackling the disagreements over how to establish fair and equitable organ allocation policies, the Act focuses solely on strengthening efforts to increase donation rates, including ways to make live donation an easier and more financially appealing option.

As passed, the Act authorizes $25 million in program development, grants, reporting authority and direct funding. In the bill's introductory statement, Congress draws attention to 3 important aspects of the legislation: the federal government's role in educating the public about organ donation, the importance of discussing organ and tissue donation as a family, and the contribution of living donors and the advancements in medical technology that make living donation possible.>

Organ Donor Awareness is definitely needed but dumping $25 million into awareness of a organ donor system now in place that does Not work for a large majority is a waste of precious funding and time that the people listed don't have to waste because it is a matter of life or death for them. Living donor liver transplants make up the least amount of liver transplants performed with medical statics of a higher recurrence of HCV post transplant.

How many more must die each day from the dire shortage of donated organs before the people in power decide to improve or totally change our National Organ Donor System to one that works.

In my opinion and those of many others $25 million could be better spent on a new National Organ Donor System that would work for the majority listed that is easy to implement and financially feasible an Opt-Out Presumed Consent National Organ Donor System.

The Presumed Consent Foundation, Inc.A dire need for "Opt-Out" National Organ Donor System.

Here's how the system works now:

Here's how the system would work under Presumed Consent:

http://www.presumedconsent.org/solutions.htm

UNOS evaluation of The Ethics Of Presumed Consent was a very biased extremely limited public phone survey of only 801 citizens and an unfair process that was last conducted January, 1991. These same findings were used for evaluation reported and presented to the OPTN/UNOS Board of Directors in 1993 in which they failed to adopt the policy of Presumed Consent.

Excerpts see link for full text:

<http://www.optn.org/about/bioethics.asp?index=1

UNOS

An Evaluation Of The Ethics Of Presumed ConsentAnd A Proposal Based On Required ResponseA Report of the Presumed Consent SubcommitteeUnited Network for Organ Sharing Ethics Committee

J. Dennis, Ph.D. (Chair) Hanson, RN, MS, CCTCErnest E. Hodge, MD

Ruud AF Krom, MD, Ph.D. M. Veatch, Ph.D.

June 30, 1993

Introduction: Alternatives for Reforming Organ Donation

The Presumed Consent Subcommittee of the UNOS Ethics Committee was charged with evaluating the ethics of presumed consent as a legal-policy regime for the regulation of the donation of cadaveric organs and tissues for transplantation. The contemporaneity of the discussion is evidenced by the recent introduction of bills based on presumed consent into the land and Pennsylvania state legislatures. In this paper we as a Subcommittee evaluate presumed consent from an ethical perspective and propose an alternative organ donation reform called "required response."

Presumed Consent: Previous UNOS Research and Analysis

Presumed consent, as one of several contending reform policies, has been considered previously by other UNOS committees and members. The UNOS Ad Hoc Donations Committee evaluated the public's receptivity to presumed consent legislation in its January, 1991 telephone poll of 801 individuals. (2) When asked "Whether physicians should be able to act on implied consent," 38% said "yes," 55% said "no," and 7% were undecided. (3) The Ad Hoc Committee suggested that many (33%) of the respondents may not have fully understood the concept of presumed consent by objecting to presumed consent on

the grounds that "a person should make the choice/give consent." In the view of the Ad Hoc Committee, "the individual has made a choice by not objecting to donation" and therefore respondents should not object to presumed consent on the basis that it precludes personal choice. (4)

The Subcommittee's Position on Presumed Consent

Presumed consent is not quite the American way. It is relatively coercive, compared to the more classical freedom of choice that characterizes our way of life. Consent should be positive, not implied. (11)

Conclusions and Recommendations

The Subcommittee concludes that reform of the organ donation process should not be based on the presumed consent model. Ethically, presumed consent offers inadequate safeguards for protecting the individual autonomy of prospective donors. Presumed consent too closely approximates "routine salvaging" in practice, although in rhetoric it pays homage to the value of individualism inherent in the consent model. The Subcommittee recommends the policy of required response as an alternative reform. Under required response, individual adults must express a preference regarding donation to the public authorities. The recording and dissemination of this preference in the event of death would help persuade the decedent's next of kin of the desirability of organ donation. Family refusals to donate constitute a major source of lost donors. Ethically, required response emphasizes the autonomy of the individual, making

unnecessary any presumption of the individual's willingness to donat!>

UNOS and our Government Agencies fear change fear Presumed Consent as not being "The American Way" for selfish personal and political reasoning while thousands die each year simply because of the dire shortage of donated organs under the organ donor system now in place.

The organ donor system was failing me and I truly believe I am still alive today only because I supplied my own cadavoric liver donor. My own 18 year old nephew died in an auto accident in order for me to live.

Thank You.

Deborah Lynch

posttransplant@...