In July 2018, the House Appropriations Committee approved the annual Labor, Health and Human Services, and Education spending bill (LHHS), passing it to the House floor for consideration.
The bill, and its Senate counterpart, contain multiple priorities of the American Society of Nephrology (ASN), a direct result of the countless emails, meetings, and phone calls made by members to their legislators.
Chief among these priorities is a sizable increase for the National Institutes of Health (NIH). Working with peer organizations, ASN and its members were able to build on the momentum of previous years and advocate for a consistent, sustained increase for the NIH in Fiscal Year 2019—including in a letter signed by a record 37 patient, physician, and provider groups across the kidney and transplant community.
The Senate version of the LHHS bill proposes a $2 billion increase for the NIH, while the House version of the bill proposes a $1.25 billion increase. In addition to the topline NIH funding level, both bills also propose sizable increases for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), $60 million in the Senate and $24 million in the House.
Another fixture of ASN’s congressional advocacy has been the dissemination of a 2017 Government Accountability Office (GAO) report on the state of funding for kidney diseases research. The report found a significant discrepancy between the burden created by kidney diseases and investment in research of the diseases. At the time it was written the government spent more on treating kidney failure than on the entire NIH or NASA budget, while allocating less than 1% of that amount on kidney research.
The House bill includes language encouraging “NIDDK to continue working with stakeholders to disseminate critical information and discuss new opportunities for research,” a clear acknowledgment of the report’s findings and the work done by ASN and peer organizations to draw attention to the need for greater investment in kidney diseases research.
Immunosuppressive drug coverage; living donor provisions
The House bill also includes language encouraging CMS to address current policy surrounding the coverage of immunosuppressive medications after kidney transplantation. Currently, Medicare pays for costly immunosuppressive medications for only 3 years after receiving a transplant, leaving many recipients who cannot afford the medications at risk of transplant failure and in need of a new transplant.
In the proposed legislation, the House Appropriations Committee encouraged CMS to commission a study of the “cost-effectiveness of the current payment policy of restrictive coverage for these lifesaving immunosuppressive medications,” as well as consider “all possible payment models for dialysis patients considering the immense amount of data showing the benefits of greater care management for this population.” ASN and peer organizations have advocated for CMS and Congress to revisit this policy for many years, and the inclusion of this language represents a major win.
Finally, ASN and peer organizations have long advocated for living organ donation to be covered under the Family and Medical Leave Act, which would provide job security for individuals recovering from a life-saving kidney donation surgery—a period of typically 4 weeks. In their bill, the House Appropriations Committee stated their support for “efforts that seek to remove impediments to live organ donation for those willing to give the gift of life to others” and requested that the Department of Labor clarify in public communications the eligibility of living organ donors for coverage under the Family and Medical Leave Act.
The inclusion of these priorities in the House and Senate LHHS bills represents a major victory for ASN members after years of advocacy. Both bills are now waiting for a vote in their respective chambers, after which the bills will be combined in a process called conferencing. ASN and its members will continue to advocate for the inclusion of language supporting the GAO report, the study of immunosuppressive drug coverage, job security for living donors, and an increase in funding for the NIH and NIDDK in the final version of the bill.
