Medicare beneficiaries who do not qualify for immunosuppressive drug coverage under Medicare Part B (the Medicare program that covers outpatient care) typically receive coverage of their immunosuppressive drugs under the Medicare prescription drug program known as Medicare Part D. Under current Medicare Part D protections, organ recipients have access to all approved immunosuppressive drugs. This protection allows physicians to tailor drug combinations to best meet the needs of the individual patients. However, a proposal released by the Centers for Medicare & Medicaid Services (CMS) on January 6, 2014 would eliminate this protection and allow Medicare Part D health plans to restrict access to immunosuppressive drugs.
Without the current protections, Part D plans, not doctors, will decide which immunosuppressive drugs patients can access. This proposal reflects a misunderstanding by CMS that immunosuppression to avoid organ rejection is a one-size fits all therapy. Patients and transplant physicians know that there is no one drug combination that works for every patient. Some patients may experience harmful side-effects with a particular drug combination that might work wonderfully for someone else. It takes a delicate balance to properly suppress the immune system in order to preserve the organ, while minimizing side-effects for each patient.
Rest assured that NKF is engaged on this issue and is educating legislators and the media about flaws in CMS’s proposal. To date, our conversations with congressional offices are encouraging. We are also reaching out to CMS to help them better understand how immunosuppression works and why it is important to cover all immunosuppressive drugs. However, we still need your help. Please email nkfadvocacy@kidney.org and share your story about how your physician was able to find the right combination of medications for you. Did the first combination of drugs work right away or did you need to try multiple combinations before the right one was found? Sharing your stories with policymakers helps us grow momentum in order to get CMS to reverse this proposal.
Advocacy in Action 
My daughter had her kidney transplant 5 and 1/2 years ago. It took quite a while to find the right combination of drugs for her. One and 1/2 years ago she developed ulcers of the colon and rectum as a bad side effect of her drugs and they had to change them. It is vital that doctors have access to the full range of immuno-suppressive drugs.
I am awaiting a kidney transplant and am very apprehensive about the side effects of immuno suppressant drugs. However. I do not have a choice as it is a matter of life or death. I am, however, confident that my doctors will be monitoring me very carefully to determine which combinations will be the best for my specific needs. Considering the dire effects if this decision is left to the discretion of someone sitting behind a desk without medical training rather than physicians who specialize in this area of medicine, this would be a death sentence for anyone who is an organ transplant recipient. This must not be a decision made by the government or drug companies who are more concerned with their financial bottom line than with the health and welfare of our citizens.
Hi – I was also very nervous about the whole concept of immune-suppression. I am 2 1/2 years post transplant and doing well. Although I am a nurse, this time I purposely did not look up all the potential side effects, but took the attitude of “If I sprout a symptom, I’ll look it up and or let my contact person know.” I have been without symptoms, but it took a lot of juggling of meds in the beginning to get my meds right. I agree that it is the patient’s doc, (not a bureaucratic doc whose objective is to keep costs contained) who needs to make the decision.
Best of luck in this journey.
Debbie
I have been on immuno suppresive medication since 1998 and I am yet alive.
I received a kidney six months ago. A true blessing. My doctors are still changing and adjusting my immune suppressant drugs. It is very important that medical physicians have the decision to use the proper drugs to keep these organs working properly. Without the proper immune suppressant drug, the body will reject the organ and it is all a waste.
Thank you, NKF for addressing this critical topic. The most important key to a successful, enduring renal allograft is the immunosuppressive regimen. There are wide variations in response to immunsuppressants. It took my transplant team and I working together to balance the dosages of my meds. In the 9 years since transplant there have been many subtle dosage changes. A change as seemingly little as .5 milligrams of Prograf makes a significant difference in my dosage trough. I know other patients whose meds were switched and underwent organ rejection episodes. Some people can take Prednisone as part of their regimen, other experience steroid psychosis from the same quantity. These judgments are best left up to experts in practice, using best practices, and most currently available information — not to CMS or any other bureaucracy, include insurers. People’s lives are at stake.
Is this an issue of brand name medications not being available or that the Part D plans are going to cover cyclosporine and not tacrolimus… for example? Brand name immunos are getting harder and harder to access through all insurances, including Part B, and employer plans.
I am fortunate to still have a functioning kidney 20 years post transplant. At 15 years my kidney began to reject due to long time use of generic cyclosporine. After bring switched to name brand Neoral, my kidney stabilized and I have enjoyed more years trouble free. If non doctors had been making decisions, I likely would have been on dialysis or looking for a new transplant. Instead, happily, the kidney is doing well. Please do not let the financial bottom line make medical decisions that ultimately are more detrimental to the patient and to the bottom line.
i am a kidney recipient post transplant 10 years. my kidney has been failing & my nephrologist has been changing drugs to try to get things under control.it is easy for a person who is healthy to make decisions about meds they don’t know anything about,but if we could change places with them i’m sure it would be a different story. it is hard enough to live wondering everyday if this is your last day on earth because of medication,those in charge need to put them selves in our shoes &see how they would feel if their life depended on some pills to live day after day.
OK…I’m THIRTY EIGHT YEARS post kidney transplant, and, while I did NOT have the pharmacutical juggling most that have replied did have, mainly cause, back in the day, there were only 2 or 3 meds that we could take, I DO understand the need for our Doctors to be able to juggle our meds around to benifit both US and our transplanted organ. For the most part, the Transplant Program in the US WORKS WELL…our Immuno Meds need to all be covered…period.
I have worked in transplant for over twenty years. Prescribing immunosuppressant drugs for transplanted patients is both an art and a highly educated skill. It has taken twenty plus years to develop the life sustaining, effective choices available today and requires the expertise and experience of well educated physicians to prescibe them appropriately for each individual transplant patient. There is no such thing as one size fits all. Governmental restricting and controlling drug choices for transplant patients is murder. The doctors need access to all the choices in order to protect transplanted organs and provide the best possible quality of life for their transplant patients. Their lives depend on it!!
Anne, can I quote you! This is a great reply to this issue. I’d like to include it in my comments to CMS on this issue. I blog at http://www.DevonTexas.com
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I received my first kidney transplant in 1978 as a young teenager at univ. of mn. They educated me as if I had an m.d. There were 2 immunosuppression drugs, prednisone and Imuran, that’s it. My kidney lasted until 2000 and there were little side effects such as high dosage of prednisone in beginning. Been on prednisone since 1978 and 2 new meds cellecept and prograf. This transplant going strong for last almost 13 years, perfect match, cadaver!! Now I am 50 and want to go back to work if medicare d does not cover immunosuppression I will be in serious trouble. Looking to go back to school for RN or LVN program but what future is there when some of our medicine is $3000 a month?? Side effects with these meds have led to painful warts on my hands, legs. Many more side effects seems but I am still alive and kicking and have had 4 children with transplant (2 of which are twins) When I lived in Wisconsin they had their own renal program and no one went without meds that was started with gov. chris Christie. Why can’t we have it nationally? Enough legislators need to be affected by diabetes, kidney disease, dialysis, and transplant. Have you put the pink dot on your license?
Access to all immuno-suppressant drugs is important and necessary.
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I received my kidney from a dear friend in May 1999. I volunteered to go into a trial for one of the immunosuppressants, Zortress Which was approved by the FDA in 2011. The Zortress was gvien in combination with Neoral and Prednisone. By taking Zortress I need less Neoral (which can be toxic to the kidney over time). My dosing was contantly being adjusted on all the medications in the early years of the transplant. 15 years since my transplant and I have not had one rejection episode! Every patient is different and it is not one size fits all. I am now experienceing restrictive access to the Zortress by my insurance company Amerihealth due to the Affordable care Act. They will only allow me a 30 day supply when I was always receiving 90 day supply and I must get prio authorization every 6 months. The Nurse’s coments earlier are correct. Insurance companies are on their way to death panels and patients will die! The ACA needs to be reformed and actually it never should have been passed without thorough discussion and review. My message to all insurance companies: WE are not cars, boats or houses, we are human beings and you should not be in the business of denying and restricting access to medical care.