TRANSPLANT RECIPIENTS
INTERNATIONAL ORGANIZATION
"Your voice of the transplant community"
 

TRIO Public Policy Committee Reports

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.

TRIO Public Policy Committee report for January 2022

CMS Request for Information (RFI)

CMS (Centers for Medicare & Medicaid Services) recently published a Request for Information (RFI). The request seeks input on changes to improve the organ transplant and donation system and both access to dialysis services and better quality of care in those dialysis facilities. The request also asks for input on how to reduce racial and disability inequities in the transplant system. Because of the wide-ranging scope of information requested, CMS is seeking input from all stakeholders such as OPOs, ESRD facilities and dialysis providers and hospitals and very importantly is seeking input from transplant recipients and families and organ donors and families. They are soliciting comments on ways to:

1. Continue to improve systems of care for all patients in need of a transplant;
2. Increase the number of organs available for transplant for all solid organ types;
3. Encourage the use of dialysis in alternate settings or modalities over in-center hemodialysis where clinically appropriate and advantageous;
4. Ensure that the Centers for Medicare & Medicaid Services (CMS) and the Department of Health and Human Services (HHS) policies appropriately incentivize the creation and use of future new treatments and technologies;
5. Harmonize requirements across government agencies to facilitate these objectives and improve quality across the organ donation and transplantation ecosystem.

And they are looking for this information in specific settings including Transplant Centers, ERSR facilities, Nursing Home Dialysis, Mobile Dialysis, and OPOs. However, in all of these areas they are including patient impact and the need for patient and family comment. Some particular areas for patient comment are noted especially including transplant center patient safety performance, satisfaction with care, quality of patient education, waitlist transparency and experience with organ offers. TRIO will be preparing comments on this RFI as a national organization but the RFI is specifically requests public comment and all TRIO members and Chapters are of course able to comment. Those comments will be due by February 1, 2022 and the formal request for comment can be found at https://www.federalregister.gov/d/2021-26146. Individual members and Chapters are encouraged to share their comments with the Public Policy Committee or share their thoughts with the Committee for inclusion with the TRIO National comments.

Part D

TRIO continues to actively participate in the Part D Coalition the goal for which is to preserve the six protected classes of drugs under Medicare. Those protected classes currently include a class for immunosuppressive drugs which obviously crucial for transplant recipients. The Coalition has recently been developing one-pagers on each of six protected classes for use in discussing the need to continue this benefit with Congressional staff. The various organizations which benefit from the current coverage have been working with Coalition staff to finalize these documents and TRIO has been part of this effort. These documents of course can have much broader educational uses. Once they are finalized the public policy committee will be sure to share the transplant drug one-pager with everyone for use as a resource.

UNOS Calls for Action on the Living Donor Protection Act (S.377/HR.1255)

UNOS is asking the public to show their support for promoting living organ donors. This bill, introduced by Senator Gillibrand and Representative Nadler, has outstanding bi-partisan support in the congress. Even though the act will expire on 12/31/2021, look for it to be introduced again in the next congressional terms. TRIO fully supports this UNOS call to action which is outlined below and you can very easily contact your representative with the included link.

UNOS call to action: Ask Congress to support the Living Donor Protection Act NOW! The Living Donor Protection Act will expire on Dec. 31! Help us get it through Congress by asking your representatives on Capitol Hill to lend their support. Here is the link to contact your member of Congress: https://p2a.co/V4FLUkR

In 2020, despite the pandemic, there were 5,726 living donor organ transplants. Unfortunately, living donors sometimes face discrimination when seeking life insurance, disability insurance, or long-term care insurance. The Living Donor Protection Act would establish protections for living donors to make sure they don’t face these hurdles. With living donor transplants down more than 23% during the COVID-19 pandemic, this legislation is more important than ever before. If you have questions about our new advocacy program, please contact This email address is being protected from spambots. You need JavaScript enabled to view it.. Thank you for all that you have done and all that you continue to do to serve the community.

Update on Continuous Distribution

The Public Policy Committee is actively following UNOS’ ongoing efforts to develop and implement a new and more equitable allocation system for deceased donor organs. That new system called the continuous distribution system will align the distribution system with the OPTN final rule. Broadly the new system will provide new mechanisms for balancing medical urgency, distance from the hospital, donor and recipient compatibility and survival. The Public Policy Committee is working to develop an article which will provide an overview of how the system will work as UNOS rolls out plans for each organ. We did want to report that UNOS in the last week announced the continuous distribution plan for lungs which may be implemented in 2023. The committee will continue to follow these activities and plan to provide an overview report within the next few months.



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