Updated September 2017
You may hear about patient advocacy on Capitol Hill, but what does that actually mean? The AST (along with its Power2Save initiative) is dedicated to working towards a bright future for transplant recipients and living donors. Here is what we've been up to...
The U.S. Senate and House of Representatives returned to Capitol Hill after a long August recess away from Washington, DC. Congress returned with a variety of agenda priorities to address as soon as possible, including a month-end deadline when the Federal Government will run out of money. Of note, this could be the first government shutdown since 1977 to occur when a single political party controlled the Senate, House and Executive Branch. All the previous shutdowns between 1981 and 2013 took place under a period of divided party majority control. Although there has been much speculation as to the path for Congressional advancement of FY 2018 federal funding, many Members of Congress and Capitol Hill staff have indicated that another multi-month Continuing Resolution (CR) is likely to be approved to provide additional time beyond the end of September to complete action on FY18 federal funding. Thus far, what little action has taken place has been somewhat positive for funding at the National Institutes of Health (NIH). The House Appropriations Committee approved a $1.1 billion increase above the $34.1 billion funding level of $34.1 billion in FY 2017 for $35.2 billion in FY2018.
The AST government relations team was extremely busy during the August Congressional recess - taking advantage of the more relaxed atmosphere on Capitol Hill to meet with many of the senior Congressional Aides and key House and Senate Health Care Committee staff. The AST government relations meetings on Capitol Hill during the August Congressional recess ranged in topics, to include: FY 2018 HHS/NIH funding; Living Donor Protection Act; Obama Care Repeal & Replace proposals; Veteran’s Transplant Coverage Act; and a variety of regulatory Agency matters.
Living Donor Protection Act of 2017 Re-Introduced in the First Session of the 115th Congress
The AST remained busy as Congress was away from Capitol Hill during this past August Recess period. The AST, along with other stakeholder organizations spent much of August meeting with Congressional offices to urge support and cosponsorship of the Living Donor Protection Act (LDPA). Although Congress was not in-session, the AST was very encouraged by several Congressional offices that pledged to cosponsor the LDPA upon their return to Capitol Hill in September. Additionally, AST and other transplant stakeholder organizations are meeting this month with Congresswoman Herrera-Beutler (R-WA) and Congressman Nadler (D-NY) to further discuss and coordinate efforts to increase cosponsors and advance the LDPA within the 115th Congress.
AST Collaborates on Joint Government Relations Advocacy Efforts in September
As Congress returned from the August recess, the AST government relations team will be hitting the ground running in September, participating in the American Association of Kidney Patients (AAKP) National Patient Summit as well as the American Society of Nephrology’s Annual Kidney Community Day on Capitol Hill. The AST has also recently joined several collective stakeholder efforts in the area of joint strategic communications targeting Capitol Hill and the Executive Branch. These joint advocacy communications included:
- Letter to U.S. Senate leadership and healthcare committee chairs and ranking members regarding the issue of adequately addressing the critical issues of transplant patients, chronic care and pre-existing conditions in any final Obama Care repeal & replace efforts.
- Letter to the U.S. Office of Management & Budget (OMB) and HHS Secretary Tom Price, MD, expressing concerns regarding the Trump Administration’s FY 2018 funding proposal for NIH, as well as a specific proposal to drastically reduce NIH support for indirect costs / facilities and administrative expenses.
- Letter to HHS Secretary Tom Price, MD, in support of preserving the Medicare Part D Drug Program’s “Six Protected Classes” which currently includes transplant patient immunosuppressive medications.
Additionally, the AST is supporting a letter endorsing the Veterans Transplant Coverage Act in the U.S. Senate and House of Representatives
National Institutes of Health (NIH) Federal Funding for FY 2017 & FY 2018
Under the category of “Cautious Optimism” the HHS and NIH have fared relatively well within the limited action that has taken place thus far on Federal Appropriations for FY 2018. As approved prior to the August Congressional Recess, the House Appropriations Subcommittee included a $1.1 billion increase to NIH above the FY 2017 level of $34.1 billion for a total FY 2018 funding level of $35.2 billion. This funding level is $8.6 billion dollars above the Trump Administration’s proposed levels - $943 million of this funding is an increase in base NIH funding. Also, a $144 million increase was included in the 21st Century Cures Act initiatives, raising it to $496 million in FY 2018 as designated by the Act. The House Appropriations Committee also included a provision in their funding bill requiring NIH to reimburse grantee research institutions for indirect costs / facilities and administrative expenses.
As you may be aware, we entered the new year and Congress under a “Continuing Resolution (CR)” with funding levels frozen at the previous year’s levels. This scenario essentially required the U.S. Congress to complete the federal funding process for FY 2017 followed immediately by the start of the FY 2018 funding process. Additionally, President Donald Trump issued a proposed FY 2018 federal budget blueprint requesting an NIH cut of $7.2 billion, or 21 percent, from the FY 2017 funding level.
Within days of the gavel falling and the calling to order the new 115th Congress, the AST joined many national organizations in the call to action supporting biomedical research and the operations of the National Institutes of Health (NIH). These efforts included a Capitol Hill Fly-In by AST leaders before the current session of Congress, direct lobbying of Congress by the Society’s government relations team in Washington, DC, joint advocacy initiatives with NIH and biomedical research stakeholders, including the AAMC and Ad Hoc Coalition for Biomedical Research.
Obama Care Repeal & Replace Legislation
The AST embraced the Congressional Recess to directly lobby Capitol Hill offices and senior Congressional aides on the critical necessity of adequately addressing the needs of organ transplant patients in any healthcare reform bill. More specifically, AST joined forces with other transplant stakeholder organizations to take to Capitol Hill and strongly communicate the chronic care and pre-existing condition challenges for transplant recipients, donors, and their families. The AST authored and delivered a joint sign-on letter to U.S. Senate Health Care Committee Leaders and Ranking Members urging them to thoughtfully and comprehensively address the chronic care and pre-existing coverage challenges for the transplant patient community. In addition to the AST, the joint letter was signed by NKF, NATCO, and The Alliance. The AST remains engaged and at the table for any future Obama Care repeal & replace efforts within the U.S. Senate, House of Representatives and White House.
Transplant Patient Summit
The Society continues to reiterate its strong commitment to patient involvement in the work of the AST. Our organization is developing and hosting a summit to be convened in Washington, DC this coming October. Several Congressional offices and Members of Congress will be participating in the Society’s Patient Summit.