Where as Rita Kocian a Registered Nurse and Living Organ Donor suffered years of life threatening complications due to her kidney donation.

 

Whereas Living Organ Donors have died from complications of Living Organ Donation.

 

Whereas there have been some Living Organ Donors who committed suicide after organ donation.

 

Whereas there are thousands of living human beings who unselfishly risk their lives and health for the purpose of restoring a quality of life to those in need of an organ transplant.

 

Whereas a transplant center has used a comatose patient on life support as a Living Organ Donor without the person's consent or implied consent that he wished to be an organ donor at death or while living.

 

Whereas the number of Living Organ Donors have surpassed cadaveric donors.

 

Whereas Living  Organ Donation saves lives and the need for organs for transplantation continues to increase and cadaver donors alone do not fulfill the need for organs.

 

Whereas Living Organ Donatonation saves billions of dollars in treatment costs after the recipients are transplanted and many recipients are able to return to the work force.

 

Whereas a current registry is in existence compiling data for the recipients of organ transplants but not Living Organ Donors and the long term effects of Living Organ Donation are not known.

 

Whereas there is no national independent donor advocate to intervene in the best interest of the Living Organ Donor.

 

Whereas there is not a national organization setting protocols or standards for transplant centers performing Living Organ Donation.

 

___________________________________________________________________

 

 

It is recognized that Living Organ Donors not only impact recipient's lives but impact the nationa as a whole, the time has come to protect Living Organ Donors through two means:

 

 

 

 

 

 

 

 

 

(a) IN GENERAL - A National Living Donor Advocate Agency will be established

     for the purpose of protecting Living Organ Donor rights and health issues.

 

     (1) The National Living Donor Advocate Agency will be funded by federal funds.

          Funds will be appropriated according to the number of Living Donors

          and cost of living increases.

 

     (2) It will be recognized transplant centers performing Living Organ Donor

          Transplants will be required to be certified by the National Living Donor

          Advocate Agency. Those transplant centers not certified by the National

          Living Donor Advocate Agency will not be allowed to perform Living Donor

          Transplants.

 

 

 

(b) COMPOSITION -

 

    (1) The National Living Donor Advocate Agency will provide a Registered Nurse

         as a donor advocate for every Living Donor, who will act independently from

         the transplant centers and in behalf of the Living Organ Donor.

 

    (2) Panel Of Reference Physicians - The purpose of the panel of physicians is

         to address act as a reference point for the Living Donor's Transplant

         Surgeon and Personal Physician, should complications arise after the

         Living Donor is released to their own personal physican's care. The panel

         will consist of but not limited to the following physicians.

         (A) Nephrologist

         (B) Gastrointestinal Specialist

         (C) Anesthesiologist

         (D) Endocrinologist

         (E) Psychiatrist

         (F) Neurologist

         (G) Pulmonary Specialist

         (H) Hepatologist

 

 

    (3) The National Living Donor Advocate Agency will be responsible for

         developing teaching material for the Living Organ Donor concerning the

         Living Organ Donor Transplantation process and potential risks involved.

 

    (4) The National Living Donor Advocate Agency will be responsible for

         maintaining a Living Donor Hotline for Living Donors to access 24 hours a

         day for questions and immediate intervention needs.

 

    (5) The National Living Donor Adocate Agency will have a review board, which

         will be responsible for setting protocols for transplant centers performing

         Living Organ Donor Transplants. The board will consist of the following:

   

         (A) Physicians - For each type of organ transplanted in Living Organ Donor

              Transplantation, there will be at least one physician representing each

              discipline. Frequently transplanted organs will be as follows: Kidneys

              at least three physicians, Livers at least two physicians. Less 

              frequently transplant organs such as lung, pancreas and intestines will

              have at least one physician. In frequently transplanted organs such as

              kidneys and livers, the physicians should have performed at least 

              twenty Living Donor transplants for the transplant they represent. If the

              organ transplant is relatively new or transplanted less frequently, the

              number of required Living Donor transplants performed will be adjusted

              accordingly.

         (B) Registered Nurse/Donor Advocate - At least five donor advocates will

               be present on the board to represent the Living Organ Donor.

         (C) Bioethicist - At least one bioethicist should be elected to the board at

               all times.

         (D) Panel of Reference - One physician from the Panel of Reference

              Physicians will be present on the board.

         (E) Living Organ Donors - At least one Living Organ Donor representing

              each type of Living Organ Donor will be on the board. Kidney and

              Liver transplants will have more than one representative.

         (F) Recipients - There will be one recipient for each type of organ

              transplanted if possible.

         (G) Family Members - There will be one family member or significant other

              from a deceased Living Organ Donor who suffered complications from

              Living Organ Donation.

 

 

 

 

 

 

 

    (a) IN GENERAL - A National Living Donor Registry will be established for the

         purpose of compiling data regarding the short and long term outcomes or

         possible complications of Living Organ Donors.

 

         (1) The National Living Donor Registry will be funded by federal funds. The

              National Living Donor Registry will be a government contract. The 

              contract will be managed in one of the following means.

                      

              (A) The National Living Donor Registry will be considered an addendum

                    to the established OPTN contract OR

 

              (B) The National Living Donor Registry will be a independent contract

                    from OPTN and will placed for open bids.

 

 

         (2) It will be recognized all transplant centers performing Living Donor

              Transplants must participate and disclose data concerning Living

              Donor Transplants to the National Living Donor Registry.

 

 

 

(b) COMPOSITION

 

    (1) The National Living Donor Registry will serve the purpose of collecting data

         on short and long term health outcomes for Living Organ Donors.

 

    (2) Transplant centers performing Living Donor Transplants will be required to

         participate in the National Living Donor Registry in order to perform Living 

         Donor Transplants. Guidelines to how the data will be collected will be

         determined by the National Living Donor Registry. The transplant center

         will be responsible for supplying the National Living Donor Registry with

         the Living Donor's Contact Information. Transplant Centers found to falsify

         or purposely exclude information to the National Living Donor Registry will

         not be able to perform Living Donor Transplants for one year.

 

    (3) The National Living Donor Registry will be responsible for disclosing data to

         the transplant centers on the outcomes of Living Organ Donors.

 

    (4) The transplant centers must present the data outcomes to Living Organ

         Donors to facilitate informed consent before a Living Donor assessment is

         performed.

   

    (5) The data from the National Living Organ Donor Registry will be made

         available to the public at no cost.

 

    (6) The National Living Donor Registry will be required to maintain a website in

         which the data will be published for the general public to access 24 hours

         a day.

 

    (7) The National Living Donor Registry and National Living Donor Advocate

         Agency will share information concerning Living Organ Donor contact

         information, Living Donor outcomes, transplant center information in order to

         better facilitate accurate data collection.

 

    (8) The National Living Donor Registry will make a concentrated and honest

         effort to collect data on Living Organ Donors for a minimum of 10 years prior

         to the establishment of the National Living Donor Registry. The National

         Living Donor Registry may collect data for more than 10 years prior to it's

         establishment, if they deem necessary.