Proposed new legislation: Organ Donor Clarification Act

Here's an Act that would encourage evidence-based policy towards reducing the dis-incentives to donate a kidney or part of a liver for transplantation.  (Evidence is not so popular these days, and compensation for donors is a red flag, so I expect it may yet meet with opposition, as did a differently composed previous attempt in 2016 .  So far I can't find the current version online--it looks like it will eventually be here-- but the offline version I've seen looks like something I will support:)

CARTWRIGHT ANNOUNCES LEGISLATION TO INCREASE ORGAN DONATION

Jul 19, 2018 

Press Release

Effort Comes Amidst Shortage, Resulting in Thousands of Preventable Deaths Every Year

Washington, DC – Addressing our nation’s dire organ transplant shortage U.S. Representative Matt Cartwright (D-PA) introduced the Organ Donor Clarification Act on July 19th.There are 115,000 people on the organ transplant waiting list and 20 people die every day as they wait for an organ. This bipartisan legislation will remove existing hurdles for donation and test out new ways to increase donations.

“This is life and death; 20 people die every day because they could not survive the wait for a viable organ,” Rep. Cartwright said.  “Kidney waiting lists in major cities can last from five to ten years, which is often longer than a patient can survive on dialysis.”

The number of people in the United States with kidney failure has increased by nearly 20% since 2000 and there are currently over 95,000 Americans on the national waitlist for a kidney. Each year 17,000 patients receive a kidney transplant, while about 35,000 new patients are added to the kidney waiting list. As many as 80,000 additional patients may be good candidates for kidney transplant, but have never even been listed. 

This legislation removes existing barriers that donors face under current law and allows for a pilot program to test the effectiveness of non-cash incentives to increase the supply of organs for transplantation.

Currently, organ transplantation is governed by the National Organ Transplant Act (NOTA) of 1984.  This law prohibits buying or selling organs for “valuable consideration.” 

“Confusion about what constitutes valuable consideration hampers donation by scaring people away from reimbursing organ donors for things like medical expenses and lost wages,” said Rep. Cartwright.  “Reimbursements are legal under NOTA, but the law’s lack of clarity and criminal penalties have created uncertainty that has prevented or delayed reimbursements in many cases. Additionally, this bill will allow experts and scientists to run pilot programs – subject to ethical review and government oversight – to test the effect of non-cash incentives in reducing the organ transplant waiting list.”

The expanding kidney wait list has also become a burden on our nation’s finances, as costs for dialysis and other intermediary treatments become more expensive each year. The taxpayer ends up footing the bill through Medicare and other social service programs. Experts project that eliminating the waiting list would save taxpayers well in excess of $5.5 billion per year in medical costs and billions of dollars more in savings to other social programs.

The Organ Donor Clarification Act would:

• Clarify that certain types of payments are not valuable consideration but are reimbursements for expenses a donor incurs.
• Allow government-run pilot programs to test the effectiveness of providing non-cash incentives to promote organ donation.  These pilot programs would have to pass ethical board scrutiny, be approved by HHS, distribute organs through the current merit based system, and last no longer than five years.

The Organ Donor Clarification Act has been endorsed by the following organizations:

• American Medical Association
• American Liver Foundation
• Americans for Tax Reform
• American Foundation for Donation and Transplantation
• American Transplant Foundation
• Chris Klug Foundation
• Donor to Donor
• Flood Sisters Kidney Foundation
• Foundation for Kidney Transplant Research
• Transplant First Academy
• WaitList Zero

The Bill is cosponsored by the following bipartisan members of the House of Representatives:

Rep. Jason Lewis (R-MN), Rep. Sanford Bishop (D-GA), Rep. André Carson (D-IN), Rep. Steve Cohen (D-TN), Rep. Brian Fitzpatrick (R-PA), Rep. Raul Grijalva (D-AZ),  Rep. Lynn Jenkins (R-KS), Rep. E.B. Johnson (D-TX), Rep. Mike Kelly (R-PA), Rep. Ro Khanna (D-CA), Rep. Tom Marino (R-PA), Rep. Jim McGovern (D-MA), Rep. Jared Polis (D-CO), Rep. Bill Posey (R-FL), Rep. Don Young (R-AK)