Funding Bill for NIH, KidneyX Receives Committee Approval and Moves Closer to Finalization

On Wednesday, May 8, the House Appropriations Committee voted to send the House Labor, Health and Human Services, and Education (LHHS) appropriations bill to the House floor for consideration. The bill and accompanying committee report provides a total of $189.9 billion in funding, a nearly $12 billion increase over FY 19 enacted levels, and includes a number of priorities of the American Society of Nephrology (ASN).

Chief among these priorities is a $2 billion increase for the National Institutes of Health, which would represent a 5% increase in funding for all Investigative Centers, including the National Institute for Diabetes and Digestive and Kidney Diseases (NIDDK). In addition to the increase, the Committee encouraged NIDDK to work with stakeholders to “facilitate new opportunities for research” in kidney failure, and to support research and clinical trials to facilitate the development of novel therapeutic strategies that “utilize genomics and personalized medicine” to address pediatric kidney diseases.

In a historic first step, the Committee included $10 million in new funding for KidneyX, a public-private partnership between Health and Human Services (HHS) and ASN to accelerate the development and adoption of novel therapies and technologies that improve the diagnosis and treatment of patients with kidney diseases. The funding, and accompanying report language, enable KidneyX to run larger prize competitions and utilize additional support services to accelerate innovation, including in its first prize competition Redesign Dialysis.

Recognizing the “high cost of kidney disease in both health consequences and federal spending,” the Committee further urged  the Secretary of HHS to coordinate across operating divisions to “demonstrate a Department-wide commitment to supporting innovative therapies and technologies with the potential to improve quality of life for individuals with kidney diseases while reducing federal costs.” The funding and supportive report language represent the culmination of countless efforts by ASN members and broader kidney community to establish the program and comes on the heals of the inaugural KidneyX Summit, where 15 prizes were awarded in the first phase of the Redesign Dialysis competition.

Also included in the bill is a $6.5 million increase in funding for the National Living Donor Assistance Center (NLDAC) to support the reimbursement of lost wages for living organ donors. NLDAC currently supports living donors by reimbursing travel expenses incurred during donation surgery. Recently, there have been several efforts to increase donation rates by expanding reimbursement beyond travel expenses to the full extent allowed under the National Organ Transplantation Act -- including an ongoing Health Resources and Savings Administration (HRSA) demonstration project to study the reimbursement of lost wages. The Committee commended the demonstration project and further urged HRSA to consider the expansion of NLDAC to “reimburse a comprehensive range of living donor expenses for the greatest possible number of donors, including lost wages, childcare, eldercare, and similar expenses for donor caretakers and expansion of income eligibility for the program to allow as many donors as possible to qualify.”

Other ASN priorities included in the LHHS bill include a

  • $4 million increase in HRSA funding for telehealth expansion, including $2 million to assess investments to-date;
  • direction for CMS to commission a National Academy of Medicine study to examine the impact on Medicaid beneficiaries -- specifically beneficiaries with kidney failure -- of the elimination of non-emergency medical transportation (NEMT) from state Medicaid programs as proposed in rule by CMS with a request that CMS halt implementation of the rule until the study has been released;
  • and language voicing concern about a proposed rule by CMS titled “Modernizing Part D and Medicare Advantage to Lower Drug Prices and Reduce Out of Pocket Expenses” which the Committee claims would “potentially delay access” to immunosuppressive medications.

Several obstacles remain before the LHHS bill is finalized by Congress.

  • First, the Senate must advance its own LHHS bill, which will hopefully include similarly positive provisions for ASN. As of publication, no markups have been scheduled, though some experts expect the Senate to take up legislation in early June.
  • In addition -- and highlighted by partisan disagreement over topline spending levels during Wednesday’s markup -- Congress must reach a deal on spending “caps” before passage of either the House or forthcoming Senate bill to avoid mandatory sequestration, a process that would have catastrophic consequences for ASN-supported programs.
  • Other obstacles that stand in the way of finalization of the LHHS bill include lifting the debt ceiling, finalization of disaster relief funding, and ongoing conflict between Congress and the Administration on issues ranging from border wall funding to House oversight of the executive branch. Last fiscal year, similar rancor resulted in the longest government shutdown on record.

ASN will continue to monitor the situation and advocate for passage of the LHHS bill.