On Thursday, January 23 ASN Councilor Crystal Gadegbeku, MD, FASN, along with 4 co-authors representing leading voices in organ and transplant policy, proposed a suite of improvements to the United States’ organ procurement and donation system at the launch of the highly-anticipated Day One Project.
Joined by former Obama and Trump administration staff (including ASN President’s Medal recipient Abe Sutton) as well as the Executive Director of the Global Liver Institute and a patient advocate, Dr. Gadegbeku highlighted four ASN goals that should be prioritized:
On Monday, April 23, the American Society of Nephrology and a record-setting coalition of 36 other organizations in the kidney community, authored a letter to the leadership of the House and Senate Appropriations Subcommittees that appropriate funds for the National Institutes of Health (NIH). ASN and others urged Appropriations leadership to support a $2.2 billion increase for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) in Fiscal Year (FY) 2019, as well as a $150 million appropriation for a Special Kidney Program.
A procedural vote on a bill to fund the government failed in the Senate shortly before midnight on Friday, January 19, causing a partial government shutdown. The federal government, whose 2018 fiscal year began on October 1, was operating on a temporary funding measure which expired without another temporary measure, or regular legislation, in place to fund the government.
Negotiations over funding have been inhibited by a partisan divide on immigration and funding for the Administration’s planned wall on the southern border of the United States. Republicans need at least 11 Democrats to support a funding measure in the Senate to comply with procedural rules. While both parties are hopeful that they can resolve the dispute within the week and pass a funding bill, the debate is contentious and neither party has shown signs of compromise.
In response to concerns of the American Society of Nephrology (ASN) and peer societies, the House of Representatives unanimously passed a package of legislation on Tuesday, July 25th that includes important provisions that would expand the use of telehealth to facilitate the use of home dialysis. Called the Medicare Part B Improvement Act of 2017 (H.R. 3178), the legislation includes an earlier bill sponsored by Representatives Diane Black (R-TN) and Suzan DelBene (D-WA) that would designate the home as an originating site for telehealth services, allowing patients receiving home dialysis to receive clinical assessments via telehealth in their home.
On Friday, September 28, President Donald Trump signed into law the annual Labor, Health and Human Services, and Education (LHHS) funding bill for Fiscal Year 2019, which contains multiple priorities of the American Society of Nephrology (ASN).
As reported in the August edition of Kidney News Online, these priorities include a $2 billion funding increase for the National Institutes of Health (NIH), and language supporting KidneyX, the study of immunosuppressive drug coverage for kidney transplant patients, Family and Medical Leave Act (FMLA) coverage for living organ donors, and recognition of the discrepancy between investment in kidney research and financial burden of kidney diseases.
The Living Donor Protection Act of 2019, a longstanding priority of the ASN Policy and Advocacy Committee and the larger kidney and transplant community, has been reintroduced in the House of Representatives and Senate by Representatives Jaime Herrera-Beulter (R-WA) and Jerry Nadler (D-NY), and Senators Kristen Gillibrand (D-NY) and Tom Cotton (R-AR).
On February 15th, 2019, American Society of Nephrology (ASN) President Dr. Mark Rosenberg sent a letter to the lead sponsors of the legislation to commend their efforts to provide hope to the more than 700,000 Americans with kidney failure, including the nearly 100,000 people on the waitlist to receive a kidney.
On Thursday, Feb. 6, a panel of leaders in the kidney innovation community highlighted accomplishments made by KidneyX at a congressional briefing in Washington, DC, and called on Congress to support KidneyX.
The briefing, titled KidneyX: Accelerating the Future of Kidney Care, featured a panel of speakers representing the Department of Health and Human Services, the KidneyX steering committee, venture capital, kidney patients, and KidneyX prize winners.
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).
At the urging of the American Society of Nephrology (ASN) members and American Association of Kidney Patients (AAKP) ambassadors’ calls and recent visits to Capitol Hill, a bipartisan group of 57 lawmakers wrote to the House Appropriations Labor, Health and Human Services, and Education Subcommittee asking them to include $25 million in funding for KidneyX. The letter, sent March 28, represents a major victory for KidneyX and is the latest example of a recent outpouring of public support for KidneyX from Congress and the Administration. Congressional Kidney Caucus Co-Chairs Representative Suzan DelBene (D-WA-01) and Representative Larry Bucshon (R-IN-08), along with champions of patient-centered innovation, Representative Terri Sewell (D-AL-7) and Representative Brian Babin (R-TX-36), spearheaded the letter culminating the intensive efforts from congressional leaders and the kidney community.