TRIO Public Policy Committee Reports

TRIO Medical Advisory Board member and kidney transplant surgeon, Dr. Tom Peters, speaking on policy at NKF conference

TRIO's committee on public policy will be discussing issues of importance to transplant patients and then posting public policy statements on this page. We greatly value the input of all TRIO members.
Committee co-chairs:
Rodger Goodacre: This email address is being protected from spambots. You need JavaScript enabled to view it.
Ira Cooperman: This email address is being protected from spambots. You need JavaScript enabled to view it.

 


The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act was just introduced in Congress! Contact your members of Congress today to make sure they're supporting the bill. Click here: Honor the Gift

Click here to view the January 17th TRIO E-News Special edition with full details on this important issue calling for your ACTION

Update: March 12, 2020

The Honor the Gift Coalition Celebrates the Senate’s Bipartisan Introduction of the Immuno Bill

WASHINGTON, D.C., – At the end of February, the Senate introduced legislation that would extend Medicare coverage of immunosuppressive medications for kidney transplant recipients.

The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (S. 3353) introduced by Senators Bill Cassidy, MD (R-LA) and Dick Durbin (D-IL)—would allow kidney transplant recipients to maintain Medicare Part B coverage for immunosuppressive medications beyond the current 3-year limit, extending coverage for the lifetime of the transplanted kidney. Sens. Cassidy and Durbin we’re joined by Sens. Joni Ernst (R-IA), Jeanne Shaheen (D-NH), Sheldon Whitehouse (D-RI) and Todd Young (R-IN) as original cosponsors. The House of Representatives introduced a companion measure of the Immuno Bill late last year.

Statement from Honor the Gift on the Immuno Bill’s bipartisan introduction in the U.S. Senate:

Today marks another significant milestone for the members of the kidney and transplant communities who have been advocating for this policy change for nearly 20 years. With today’s introduction in the Senate led by Senators Bill Cassidy and Dick Durbin, we’re one step closer to finally guaranteeing that kidney transplant patients won’t lose their transplanted organ due to an inability to pay for their lifesaving immunosuppressive medications.

Now that the Immuno Bill has been introduced in both the House of Representatives and the Senate, we call on every member of the kidney and transplant community to take a stand for recipients, donors and donor families – it’s time for all of us to contact our members of Congress in support of this legislation. Together, we’ll be able to protect kidney transplant patients and save lives, honor the gift of their donors and donor families, and according to the U.S. Department of Health and Human Services, the legislation will result in significant savings for the Medicare program.

Advocates can contact Congress and express their support for the Immuno Bill by visiting the Honor the Gift website and utilizing our digital advocacy tool.

Learn more about the Honor the Gift coalition’s efforts to extend Medicare coverage of immunosuppressive medications for kidney transplant patients at HonorTheGift.org.

 TRIO - Transplant Recipients International Organization, has been working with Honor the Gift, a patient-centered grassroots campaign focused on addressing the immunosuppressive medication coverage issue. Since launching on March 1 in 2019, the campaign has seen great support from both the kidney

and transplant community and has successfully resurrected this issue once again in Washington, DC.

In 2019, under the leadership of Secretary Alex Azar – whose father was a kidney transplant recipient – the Department of Health and Human Services (HHS) released two reports which estimated that extending coverage of anti-rejection medications would result in significant savings for Medicare.

The community and the Administration have both shown their support for extending Medicare’s coverage limit on immunosuppressive medications, now it’s Congress’ turn. The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act, H.R. 5534 and S. 3353, has been introduced again in Congress and the Senate this year and we need your voice to ensure it gets passed! Please contact your members of Congress today and urge them to stand with kidney transplant patients and #HonorTheGift of their kidney donors and donor families.

Contact your legislators today! https://honorthegift.org/act/

How you can help:

Contact your legislators today!  You can use the Honor the Gift site at https://honorthegift.org/act/

You can also go to the TRIO website and under the Public Policy tab there is a link which provides you information on how to contact your legislators directly.

Spread the word on social media.  Below are three suggested social media posts on Facebook, Twitter or other sites.  Please consider sending the information to you contacts on posting on the Chapter website.  If you use Twitter, please ask the recipients to retweet!

Click here to download graphics

·         The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act has just been introduced in the Senate! Contact your legislators now to ask that they support this life-saving legislation! #HonorTheGift #TRIO  https://bit.ly/35S9T9K

·         Many kidney transplant recipients are at risk of losing access to their immunosuppressive medications this year. Contact your legislators and urge them to #HonorTheGift of kidney donation at https://honorthegift.org/act/ #TRIO

·         Kidney transplant recipients need your help! Contact your legislators today and urge them to support the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act! https://honorthegift.org/act/ #HonorTheGift    #TRIO

                                                                        SPREAD THE WORD

 

Recent committee reports:

Update on Medicare Part D Protected Classes of Medications
Jan 2020

Physicians and pharmacists have known for a long time that different generic versions of the same drug work differently from one patient to the next. So, the generic version of Prograf, called Tacrolimus, can perform differently on immunosuppression from manufacturer #1 than from manufacturer #2.

The Congress recognized this fact more than 15 years ago and created a special section of the Medicare Part D Prescription Drug Program called the protected classes. Immunosuppression for transplant recipients is one of the protected classes. Under this special section of Part D, pharmacies must carry a range of the same generic drug that allows a patient to have a prescription filled exactly the same from a single manufacturer every time a prescription is presented.

In 2014, the Obama Administration proposed weakening the protected classers by removing protected status from three classes of medication, including immunosuppressants. Recognizing this assault, a dedicated coalition of patient groups came together to form the Partnership for Part D Access. The purpose of this group was simple: to guarantee that a patient in any of the protected classes would be able to fill a prescription the same way every time a refill was needed. When faced again, in 2019, with damaging actions by the Trump Administration, the Partnership for Part D Access again stepped in mobilizing patients from across the nation to oppose the proposed policies.

To date, the Partnership has been successful in making sure that CMS and the Medicare program continue the protected class program as formulated by Congress. Studies have been commissioned and presented to Congress and to HHS showing that there are no cost savings that make sense by reducing the number of drugs in the protected classes that are covered by Medicare.

The vigilance over the protected class program is ongoing. Right now, the program is stable and unchanged. However, there are always factions in the Legislative and Executive branches that want to make a change in the name of “economy”.

As a member of the Part D Partnership, TRIO will continue to work with all interested parties to guarantee access to prescriptions every single day. Please watch this page for any new developments that ask you to make a grassroots effort to maintain your rights!

For more information on the efforts of the Partnership for Part D Access, please go to the website: www.partdpartnership.org.

NASH/NAFLD
Jan 2020

 A dedicated group of physicians, researchers, and public health officials have come together to publicize the growing epidemic of the class of liver diseases called NASH/NAFLD.This stands for Non-Alcoholic Steatotopichepatitis/Non-Alcoholic Fatty Liver Disease.This class of diseases attacks the liver and can lead to cirrhosis and the need for transplantation.The website for this group is the NASHALLIANCE.ORG.The Alliance is made up of a staff of 15 professionals including physicians and educators.There are also 8 affiliated organizations that support the aims of the Alliance, including TRIO.

The group has been very active in promoting awareness through education.In addition, the group is working with a number of federal government agencies for public education funds as well as research grants and programs.

The group is also helping to draft legislation that would expand the coverage of NASH/NAFLD into the public health space through the National Institutes of Health (NIH). Through an act called National Authorization for Nonalcoholic Steatotopichepatitis Act of 2019, the Centers for Disease Control and Prevention (CDC) would give community-basedgrants and fund studies to promote awareness and treatment and more importantly, prevention of the disease through education.

NASH/NAFLD has the potential to lead individuals to a world of transplantation.TRIO is committed to continue as a partner in the NASH Alliance to prevent the spread of this silent killer.

To join in on the topic discussions visit the TRIO Bulletin Board to provide your opinions about these issues.