The goals of LODAP are to advocate for the protection and rights of Living Organ Donors. Currently, thousands of people die each year due to the lack of available organs. Organ Transplantation is the only potential answer for people in organ failure to regain the quality of life that most people live everyday. Living Organ Donors currently outnumber cadaver donors. The number of people placed on the transplant list continues to increase as does the need of organs for transplantation. Everyone must realize some recipients often need another transplant during their lifetime. It is highly unlikely in the near future that Living Organ Donation will decrease. As the number of Living Organ Donors continues to rise, so does the need to insure Living Organ Donors are protected and receive the best care possible. Listed below are the reforms and what each one of us can do to insure Living Organ Donors are protected during their incredible sacrifice to better the life of another human being.

 

 

 

 

 

1. Living Organ Donor Registry - A Living Organ Donor Registry needs to be developed and instituted for Living Organ Donors. Currently there is a government contract, OPTN,  which tracks the outcomes for transplant recipients. The contract was first awarded to UNOS and it continues to hold the contract. A one year follow-up on Living Organ Donors does fall under the OPTN, but it is for only one year. Any subsequent years is not done, so Living Organ Donors do not have national data for possible long term affects of Living Organ Donation.

 

In order to have informed consent regarding Living Organ Donation, Living Organ Donors need to have national data made available to them. It is impossible for the  transplant center inform Living Organ Donors on the long term risks specific to living organ donation, when there isn't any national data available. Due to the lack of national data, the transplant centers are only able to give information from studies or their own center's experience. It is unacceptable for the centers not to have national data available to give to their patients.  Living Organ Donors need to be informed in order to make an educated decision before donating.

 

 

2. Legislation - There are numerous issues that need to be addressed through legislative laws. Living Organ Donors face several financial issues related to living organ donation. Some Living Donors have not experienced problems obtaining health and life insurance policies due to the fact some companies realize donors have to be without health issues in order to donate. Other Living Organ Donors have been denied or had increased premiums for health and life insurance policies. The Living Organ Donor Protections Act, is a bill introduced before the Senate in which Living Organ Donation and the complications, could not be considered pre-existing condition in regards to group policies. This bill has not gone further and just sits there. Legislation is needed to insure Living Organ Donors have a reasonable health and life insurance policy.

 

Some organizations and individuals have suggested Living Organ Donors be given a one time standard federal tax deduction. The amounts suggested vary, but this would enable Living Organ Donors some relief from the expenses incurred and/or monies lost during donation.

 

 

3. Independent Living Donor Advocate - Every Living Organ Donors needs an advocate independent of the transplant center/transplant team. LODAP has outlined such a program they deem suitable for an independent advocacy agency for Living Organ Donors. The outline is extensive from initial protocols to care plans for the Living Donor.

 

In this advocacy/regulatory program, every Living Organ Donor would be assigned a Registered Nurse who would work in the capacity of an advocate/case manager for the Living Donor. The RN would insure the Living Donor received informed consent, understood the risks of the surgery and possible affects on the Living Donor. The nurse would colloborate with the transplant centers staff concerning the needs of the Living Organ Donor. The nurse would work with other disciplines such as social workers, chaplains, doctors to insure the Living Donor received the best care possible during the whole donation process and after donation. The Living Organ Donor would be able to contact the RN or someone in the program  years later concerning issues related to the donation. Every nurse would be under the direction of a Medical Director assigned to each state in which there are transplant centers.

 

The program would have a board consisting of doctors, nurses, social workers, chaplains, pharmacist, living donors and recipients. The doctors would consist of a transplant surgeon and specialist from each type of organ transplanted. The board would be responsible for developing protocols, researching issues/complications, and reviewing complications/complaints from Living Organ Donors. 

 

The program would have an educational division where educational material would be developed for transplant centers, transplant teams, medical staff administering care to Living Organ Donors and Living Organ Donors. In order for the transplant centers to perform Living Organ Donor Transplants, they would need to be certified by the advocacy/regulatory program.

 

 

 

 

 

Reform is needed in the Living Organ Donor Process. Living Organ Donors need protection and an independent advocate, since Living Organ Donors receive no physical benefit from the donation. The only way reform is going to take place is by public support.

 

 

1. Write Legislators - If 20 percent of the Living Organ Donors, Recipients and those on the waiting list for transplantation, wrote every Congressional Representative, then reform would take place. Writing can be time consuming but  it is not as time consuming as the Living Donation process or wait list time. While the task might seem overwhelming, it really doesn't take that much time. It would require writing one letter and making copies of that letter. The most time consuming is writing addresses on envelopes. If everyone took two hours a day for one week and wrote their Congressional Representatives, the impact would be impressive. Imagine the impact on transplantation if each Congressional Representative received 15,000 letters in their office. In order to make the task easier, LODAP composed an outline to serve as a suggestion for a Bill to protect Living Organ Donors. We named the suggestion "Request For The Rita Kocian Bill", which is listed on the website. The suggestion for the Bill is in memory of Rita Kocian, a nurse and Living Kidney Donor who suffered numerous life threatening problems due to the kidney donation. Feel free to print out the "Request For The Rita Kocian Bill" and send it with your letter. You may also print out any other material on this website and include it with your letter.

LODAP suggests you also send an e-mail to back up the letter you send to each Congressional Representative. The Registering Complaint Section of this website lists the websites for the Senate and House of Representatives.  You can obtain the addresses and e-mail addresses for each representative on the websites.

 

If you are going to Washington, DC, some Congressional Representatives are more than willing to meet with their constituents. In order to obtain a meeting, you must fax your request to the Congressional Representative's office. You can call the Representative's office to obtain the fax number and how to request a meeting.

 

 

2. Media - Write letters to those in the Media. While pressure from those personally affected by Living Donor transplantation is necessary, public support is also needed.  The only way to gain more public support is by writing the local press, talk show hosts or national new shows concerning the issues and need for reform.  Those personally involved need to relay their own personal stories and make sure the issues are also addressed.

 

 

3. Health Organizations - Write various organizations such as JCAHO, your State Health Department, etc., requesting their support for reform. You can use the same letter you used for the Congressional Representatives and print out any information from this website.

 

 

4. Living Organ Donors - As a Living Organ Donor your testimony is perhaps the most beneficial to protecting potential Living Organ Donors. Each Living Organ Donor's experience with the transplant center, whether negative or positive provides necessary information for reform. While the purpose of Living Donation is to improve the quality of life for those in need of an organ transplant, quality of life and good care should not be ignored for Living Donors. While you may not be able to donate an organ again, you can help insure the quality of life for another person, the Living Organ Donor.

 

Positive Living Organ Donation experiences provide valuable insight and solutions for reform. There are many centers which provide excellent care for their Living Donors and their standards of care should be an example for all centers. When writing the legislators, inform them you are a Living Donor, you support reform and every Living Donor deserves the excellent standard of care you received. Explain you understand some Living Donors have received substandard care and this is unacceptable for someone who is willing to risk their life so another person might have a better quality of life. If you want to personalize your correspondence, write a short story about your experience as a Living Donor and send it along with your letter. Your experience will provide a valuable contrast to those who had a negative experience.

 

A negative experience can either be the treatment you received at the transplant center or other issues such as financial problems you encountered as a Living Donor. Your experience as a Living Organ Donor will substantiate the need for reform. While most donors do not have a negative outlook on Living Organ Donation and would still donate again, it does not excuse the lack of good care or financial problems Living Donors face. As a Living Organ Donor you need to inform those you are writing that while the act of donating was positive, your care or financial experience was not positive. Write a short story citing the problems you encountered, make suggestions and print out any information on this website.

 

 

 

5. Recipients and Wait List - As a recipient or a person on the wait list for a transplant you understand the severity of the problem regarding the shortage of organs. Living Donors believe in your life and wish to end your suffering by donating. Even though Living Organ Donors do not ask anything in return for donating their organ to you, they still need support. You can give back to Living Organ Donors by requesting reform to insure their needs are met during the donation process. While you might think this does not apply to you because you are a stranger and don't know a Living Donor, realize there are complete strangers who are willing to donate anonymously at transplant centers and you might be a potential recipient. Living Donors spend their personal time testing, taking off work for surgery and at times spend their own monies to better someone's life. A few hours everyday for one week is one gift you can give to the Living Donors. You might want to write your own story and include the difficulties you encountered while waiting for an organ. If you are a recipient, include in your story what the experience was like to find someone who was willing to donate to you. You may print out anything on this website and include it in your letter.