Updated October 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...
AST Transplant Patient Summit Speaker Congressman Raul Ruiz, M.D., Cosponsors Living Donor Protection Act
Following his remarks to the AST Transplant Patient Summit (TPS), Congressman Raul Ruiz, M.D., returned to Capitol Hill and promptly co-sponsored H.R. 1270, Living Donor Protection Act. Congressman Ruiz joined the more than 50 members of the U.S. House of Representatives in supporting this critical transplant patient legislation.
Please take a moment today to encourage your Member of Congress to co-sponsor H.R. 1270, Living Donor Protection Act.
Background & Call to Action
On Tuesday, October 24th, Congressman Jerrold Nadler (NY) and Congresswoman Jaime Herrera Beutler (WA) addressed the AST Transplant Patient Summit (TPS) in Washington, DC and have requested your help to advance import living donor legislation!
Nadler and Herrera Beutler introduced H.R. 1270, Living Donor Protection Act, on March 1, 2017. The legislation has more than 50 co-sponsors, but needs more!
The Living Donor Protection Act - H.R. 1270
Introduced on March 1, 2017, by Representatives Nadler (D-NY) and Herrera Beutler (R-WA) in the U.S. House of Representatives.
What Does the Legislation Do?
- This bill prohibits discrimination based on an individual's status as a living organ donor in the offering, issuance, cancellation, coverage, price, or any other condition of a life insurance policy, disability insurance policy, or long-term care insurance policy.
- The bill amends the Family and Medical Leave Act of 1993 to specifically include living organ donation as a serious health condition that entitles a covered employee to leave under that Act.
- The Department of Health and Human Services must update public service announcements, websites, and other media regarding live organ donation to educate the public on the benefits of live organ donation and on access to insurance for living organ donors.
How May I Help Congressman Nadler and Congresswoman Herrera Beutler Pass the Living Donor Protection Act?
- Please call your Member of Congress and ask that they co-sponsor H.R. 1270 today: Switchboard: (202) 224-3121
- Look up Your Member of Congress: ContactingCongress.org
Although we are requesting that every Member of Congress co-sponsor H.R. 1270, we are also focusing particular attention on those Members of Congress that serve on the 5 key Congressional Committees of jurisdiction.
The legislation is pending before the House Committee on:
- Energy and Commerce
- Oversight and Government Reform
- House Administration
- Education and the Workforce
- Financial Services
Please take a moment to call or email your member of Congress and request that they co-sponsor the Living Donor Protection Act.
The End Stage Renal Disease Demonstration Act was introduced in U.S. House of Representatives – the transplant community remains concerned.
On October 26, 2017, Congressman Jason Smith (R-MO) introduced H.R.4143. The bill seeks to establish a demonstration program to provide integrated care for Medicare beneficiaries with end-stage renal disease, and for other purposes. The legislation remains of concern to AST, ASTS, and other transplant community stakeholder organizations - as the bill continues to lack appropriate patient referral mechanisms for organ transplantation and includes financial disincentives for providing organ transplantation as an option for patients.
The bill was cosponsored by Representatives Blumenauer (D-OR), Cardenas (D-CA) and McMorris Rodgers (R-WA). HR 4143 was referred to the House Ways and Means Committee as well as the House Energy and Commerce Committee. The legislation currently does not have a companion bill introduced in the U.S. Senate.
While we continue to exam the possible implications of this legislation, the AST and the transplant community have been communicating regularly with the bill's sponsors on Capitol Hill throughout the legislation's development to improve the legislation. Efforts have included AST leadership meeting with the sponsoring Members of Congress and committee staff on Capitol Hill as well as joining transplant stakeholder community initiatives to impact H.R. 4143 (direct lobbying, joint letters to Capitol Hill, etc).
Veterans Transplant Coverage Act Endorsed by AST, ASTS, AAKP & NKF
Congressman John Carter (R-TX) introduced H.R. 1133, the Veterans Transplant Coverage Act earlier during this 115th Session of Congress. The bill seeks to expand access to lifesaving transplant procedures for veterans by authorizing the VA to cover the costs of an operation on a living donor to carry out a transplant for an eligible veteran even if the living donor is not otherwise eligible for VA health care.
Currently, other federal government health care programs cover live donors’ health care needs. The Centers for Medicare and Medicaid Services (CMS) provides coverage of living donors for kidney transplants. The transplant community has communicated to Congressional leaders that, at a minimum, our nation’s Veterans deserve the same access to care that Medicare beneficiaries receive.
The Veterans Transplant Coverage Act would help ensure that the men and women who have served our nation are given the same access to life-saving treatments that other American citizens have. H.R. 1133 also authorizes the VA to cover live donor transplant operations at a VA or non-VA facility, increasing access to high-quality medical care and transplantation.
Recently, AST, ASTS, AAKP & NKF delivered a joint letter of support to Capitol Hill endorsing this important legislation.
FY 2018 Federal Appropriations & NIH Biomedical Research Funding
The AST has continued work with and applauds Congressional leaders in the U.S. House and Senate for maintaining the National Institutes of Health (NIH) as a key national priority. The AST has further urged the enactment of a bicameral, bipartisan budget agreement that raises the spending caps and enables a $36.1 billion investment in NIH in FY 2018, as approved by the Senate Appropriations Committee.
At present, the House and Senate Appropriations Committees are continuing to work to finalize FY 2018 spending bills. The House Committee has included a $1.1 billion dollar increase for NIH - and the Senate Committee has approved a higher level $2 billion increase for the Institutes.
The AST continues to work closely with Capitol Hill leaders and biomedical research stakeholders organizations and coalitions to support a robust increase in federal research dollars in 2018.
The AST Continues to Champion Issues of Patient Chronic Care and Pre-Existing Conditions.
As the U.S. Senate and Trump Administration continue to develop and attempt to advance ObamaCare reform policy alternatives, the AST has engaged on both fronts to communicate strong concerns and opposition to any reform proposals that lack meaningful access to affordable coverage for transplant patients and those individuals in need of chronic care and pre-existing condition coverage.
Efforts to impact and communicate patient concerns regarding healthcare reform proposals have included AST direct lobbying and coalition advocacy activities - including a recent joint letter to the U.S. Senate from AST and mother concerned stakeholders.