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June Public Policy Report


Transplant recipients are faced with the life-long prospect of prescription drugs for the long-term success of a solid organ transplant. Many of these drugs, even the generic versions, have become very expensive running into hundreds of dollars per month for 2, 3, even 4 or more different medications.

Most pharmaceutical companies manufacturing immunosuppressive drugs have patient assistance programs to help with purchasing these prescription medications. CMS has a website with information about how to use these programs, at the following location:

In addition, the Asthma and Allergy Foundation also maintains an excellent website with information about patient assistance programs:


TRIO continues its active participations in the Partnership for Part D Access which is a patient led collation committed to maintaining beneficiary access to the full range of drugs available under Medicare Part D. The Partnership has a special focus on maintaining the six protected classes of drugs under Part D which includes immunosuppressive drugs. We all of course know how important this is to our community as immunosuppressives are not interchangeable and often prescribed in combinations particular to individual transplant patients. We require consistency and stability and access to all versions of particular medications to protect our transplants. The Partnership has been working to have a Congressional Resolution passed in support of maintaining the six protected classes and is now visiting individual members of Congress to seek their support. During these visits they have found a number of misconceptions about the protected classes including the ideas that it does not allow drug plans to manage utilization, that it stymies the use of generic drugs, and that it drives up Medicare costs, none of which are true. The Partnership has found that during these visits to congress members that the voice of individual patients explaining how these drugs effect their lives is particularly effective in convincing individual members of Congress to sign on to the resolution to maintain the six protected classes. Our committee suggests that at any opportunity individual TRIO members or Chapters have or can create to speak with their Congressional representative should include a discussion of how important maintaining protection for the six protected classes is for the transplant community and encouragement of support for the Resolution.


The role of caregivers and care partners has never been more important in the American health system than in the past few years, as families coped with Covid and all the restrictions the pandemic required.

Most often unpaid activities, caregiving has assumed an immense role in providing safe and secure health care services to the patient and family communities.

In recognition of this growing role, President Biden announced an Executive Order in April of this year to enhance and strengthen federal programs that support caregivers. While many of the new and changed policies from the federal government have yet to be announced, TRIO is working with the National Alliance for Caregiving ( to create a webinar for transplant patients and caregivers to understand all the parts of the Executive Order and how it will affect our futures.

Please stay tuned to this column for additional information.


Many of you may remember the Honor The Gift campaign launched several years ago to gather grassroots support on behalf of Living Donor Protection legislation making its way through the Congress. TRIO provided its support leading to the successful passage of the Living Donor bill.

The Honor The Gift coalition has launched a new campaign of vital interest to the transplant community and of major medical interest on behalf of patient safety. TRIO is proud to participate in this new campaign as we did in the first.

What is the new campaign doing? In recent years, major advancements have been made to test for potential organ rejection. Previously, painful and potentially harmful biopsies were carried out in heart, liver, and lung recipients to check for signs of rejection. And if detected, it meant that rejection had already begun.

However, the new testing procedures are blood work, accomplished during a recipient’s normal post-transplant visit followup. The new test can detect rejection even before it begins without the need for biopsies and the potential risk that biopsies entail. This new test involves looking for cell-free DNA (cfDNA) coming from the organ; this DNA is the donor DNA and shows that a potential rejection episode may be starting.

However, Medicare has recently launched an effort to restrict as well as eliminate the use of the cfDNA blood test during routine patient maintenance. The new Honor The Gift campaign will work to show Medicare that this new policy is poorly thought out and medically harmful to the transplant community.

We will send out notices as we receive the information about proceeding with the campaign.


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