Update: Proposed CMS Regulation on Transplant Medications Shelved

We are happy to update this post and report that CMS (The Centers for Medicare & Medicaid Services) has pulled back on controversial Medicare drug benefit proposals.

CMS was proposing severe limitations for transplant medications covered under Medicare Part D. This could have jeopardized the health and lives of transplant patients who depend on these drugs. To find out more, read Diana Furchtgott-Roth’s article, which provides an excellent breakdown of the CMS proposal.

CMS did not plan to hold public hearings on this proposal. The decision to implement this protocol change was to be partly based on the responses CMS received during the public comment period ending March 7, 2014.

Congratulations to the patients and concerned citizens who made a difference by writing to their Congressman and CMS.

4 thoughts on “Update: Proposed CMS Regulation on Transplant Medications Shelved

  1. This is not fair to us transplant patients that
    Depend on Medicare to cover these life saving
    Medicines. How can we stop this??!!

  2. Hello, John! If you click on the Trio bulletin link in our blog post, there are links at the bottom of their page that will allow you to send your comments straight to CMS. Thanks for your support on this.

  3. I just sent this in to public comments. Hope it’s not too long or confusing!

    I am the recipient of a kidney transplant.

    I was very fortunate when my Polycystic Kidney Disease progressed to ESRD and I needed to start dialysis: An old friend offered to donate one of her kidneys to me. When it was found we weren’t a match, she agreed to go into the Paired Donation Exchange with me. After a few months on the Paired Donation waiting list, I received a call that a perfect match had been found for me. This created a donation chain of three donor/recipient pairs. My kidney flew across the country on a beautiful, sunny day in August, and it worked perfectly right from the start. My friend’s kidney flew back across the country to be transplanted into someone in need on the other coast. It was a beautiful thing.

    I now take immune suppressant drugs every single day, twice a day, without fail. Without these drugs, my body would quickly reject its new kidney.

    I have good insurance coverage, which keeps the cost of my (generic) immune suppressive drugs relatively low. But what if I could no longer pay the premium? What if I had to rely on Medicaid after this change to Part D had actually been implemented? It would be impossible for me to pay the drug costs out of pocket. This beautiful gift of life from my friend, and the generosity of all the other donors, will have been for nothing. A waste. Why would anyone bother with a transplant when the necessary medications to keep it working would not be available? And what if insurers follow your lead and stop listing immune suppressive drugs? It will doom kidney transplantation for all but the wealthiest people.

    This situation cannot be allowed. It would have a chilling effect on living kidney donations, on deceased donations, and transplants in general. Please reconsider the 2015 policy changes you are proposing. There has got to be a better way.

    p.s. I have seen the devastating effects of depression and encourage these important drugs to remain on the list as well.

  4. This is a great letter, Edith. Thanks for sharing it with us and joining in the fight against the CMS proposal!

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