Trump Administration embraces Cartwright proposal to help Americans with kidney disease

On July 10, President Trump recognized Congressman Matt Cartwright (PA-08) as he unveiled an executive order to help increase kidney donations across the United States, and to provide better care for the thousands of Americans who suffer from kidney disease. In March, Rep. Cartwright had spearheaded a letter to the administration signed by 34 lawmakers of both parties asking for action to promote organ donation and remove barriers for those who give the gift of life.
“I’m gratified to have the White House adopt our proposal in this executive order,” said Congressman Cartwright. “Too many people have died waiting for a kidney donation in this country, and we have to make the process easier for the donors.”
Among other things, the administration’s Executive Order on Advancing American Kidney Health calls for expanding the definition of allowable costs that can be reimbursed under the Reimbursement of Travel and Subsistence Expenses Incurred Toward Living Organ Donation program, allowing reimbursement for lost wages, as well as child-care and elder-care expenses.
The March letter is reprinted here:
March 8, 2019
Dear Secretary Azar,
We write to applaud your ongoing work to increase living organ donation in the United States, and we wish to share our commitment to working with you on this vital issue. At the end of 2016, there were 726,331 people living with end stage renal disease (ESRD) and an estimated 30 million adults with some form of chronic kidney disease (CKD). Kidney transplantation is the most effective therapy for kidney failure, the ultimate outcome for many with CKD.
We were very pleased to see the Health Resources and Services Administration (HRSA's) Healthcare Systems Bureau advance, "Lost Wages Support for Living Organ Donors Demonstration Project" (HRSA-19-069). We support further action to provide lost wages support, such as expanding the scope of the National Living Donor Assistance Center (NLDAC). The fear of unemployment or taking unpaid time off from work is a common reason cited by those who choose not to donate and is a significant disincentive to organ donation.
As you know, NLDAC provides approximately $1.9 million each year to reimburse travel expenses for eligible applicants. Last year, the program received over 1000 applications for assistance and nearly 9 out of 10 applications were approved. Importantly, 75 percent of these donors indicated that they would not have been able to donate without the assistance provided by NLDAC. A recent peer-reviewed study found that for each $1 spent on the program it yielded $28 in Medicare savings in dialysis costs.
It is our understanding that The Organ Donation and Recovery Improvement Act (P.L. 108-216) would allow NLDAC to be expanded to cover lost wages and other non-travel expenses of donation. If the purview of the NLDAC were to be expanded, for example, to cover lost wages, childcare, and other unreimbursed expenses incurred by a living donor, more individuals could donate and more transplants could occur saving valuable lives. We would like to work with you toward that end.
We thank you for your work to increase living donation and to address barriers that living donors face. We stand ready to work with you on strengthening the NLDAC, as well as other ways to remove disincentives so that more Americans will consider giving the gift of life, through living organ donation.
Members of Congress:
Matt Cartwright
Jaime Herrera Beutler
Alexandria Ocasio-Cortez
Andre Carson
Bennie Thompson
Bill Posey
Bobby Rush
Brian Fitzpatrick
Brian Higgins
Dan Newhouse
Debbie Dingell
Doug Lamborn
Eleanor Holmes Norton
Eliot Engel
Mark DeSaulnier
Mark Takano
Tim Ryan
Tom McClintock
William Lacy Clay
Ted Deutch
Tom Cole
Tulsi Gabbard
Gret Gianforte
Jan Schakowsky
Lucille Roybal-Allard
Jerrold Nadler
Jim Hines
John Lewis
Mark Pocan
Pete Visclosky
Pete King
Suzan DelBene
Suzanne Bonamici
Yvette Clarke