New Rules to Help Organ Supply Crisis and Funding for Living Donors

On December 17^th, the Administration and Congress took significant steps towards improving kidney disease policy and funding. The National Kidney Foundation applauds these efforts to help the nearly 95,000 Americans waiting on a life-saving kidney transplant.

The Administration announced two new proposed rules to address the critical organ supply crisis in America by expanding reimbursable expenses for living donors, establishing quality metrics for Organ Procurement Organizations (OPOs) and increasing the supply of transplantable deceased donor kidneys.

One of the proposed rules will expand financial assistance to living donors under the National Living Donor Assistance Center (NLDAC) to  allow donors who take time off from their jobs for donation and recovery to receive reimbursement for lost wages, childcare and eldercare expenses—all of which NKF has advocated for as outlined in A Path Forward for Increasing Kidney Transplantation. These changes will help ensure living donors are made financially whole after giving the gift of life.  Increasing the available pool of resources under NLDAC is critical to ensuring its success and to increasing the number of living donors.

Another proposed rule will put quality metrics in place for OPOs to help minimize kidney discards and encourage the use of less-than-perfect deceased donor organs, which can still be viable options for patients on the waitlist. The Centers for Medicare and Medicaid Services (CMS) estimates that if all OPOs were to meet both the donation and transplantation rate measures, the number of transplants would increase by thousands per year. If finalized, these changes would take effect in 2022.

Meanwhile, The House of Representatives approved the FY2020 appropriations bill that includes a funding increase for several kidney disease programs within the Department of Health and Human Services (HHS).

Specifically, the bill increased funding for the NLDAC by $1 million, bringing the overall funding level to $4.5 million.  The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) will receive over $2.1 billion.

Additionally, Congress provided $5 million for the KidneyX initiative – a public-private partnership to accelerate the development and commercialization of next-generation innovations to improve in the prevention, diagnosis, and treatment of kidney diseases.  Finally, CDC will receive $2.5 million towards the prevention and promotion of kidney disease. NKF applauds Congress for these investments in programs to improve the health and well-being of people with kidney disease.

In the coming months, NKF will amplify our advocacy efforts with the Administration and Congress to ensure that these public policy opportunities provide the maximum impact for patients. NKF’s incredible advocates are responsible for the federal government’s unprecedented focus on kidney disease patients; and we look forward to your continued partnership in 2020.