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Old Wed Jun 15, 2011, 09:43 PM
Sally D Sally D is offline
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Join Date: Jul 2010
Location: Fortuna, California
Posts: 10
Part D, Medicare insurance, refusing to pay for my Prograf.

I was treated at Stanford last May after my first relapse. I had ATG horse and responded well. My doctor switched me to Prograf from Cyclosporine since my Creatine worsened. I've had very few side effects with this drug and my old insurance didn't hesitate to pay for it (with a small copay). I joined Medicare May 1st and we've been fighting ever since. The latest denial says that Prograf is not FDA approved for the treatment of AA. Since there are so few people with AA there will probably never be a study. Does anyone have experience with Med Part D covering Prograf?
Any information would be greatly appreciated. Thank you.
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Sally, diag. VSAA summer '08, ATG and Cyclo. Benign brain tumor 9/09 removed, relapse SAA, treated 5/10. Good response plus Prograf.
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Old Wed Jun 15, 2011, 11:57 PM
Neil Cuadra Neil Cuadra is offline
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Location: Los Angeles, California
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Sally,

I'm sorry you've run into this situation. It's a problem that many patients have faced: one immunosuppressant is Medicare-approved for aplastic anemia and one is not, leaving doctors and patients in a bind when one is medically appropriate as a replacement for the other.

When your Medicare Part D plan doesn't cover a drug, the first thing to do is to see if another available plan does. Each prescription plan provider has their own formulary of drugs they cover. However, the Medicare Plan Finder seems to show that none of the California plans cover Prograf.

I suggest contacting any or all of the following groups to see if they can help you:
  1. Your doctor, to see if there are other choices for your treatment or if you really need to use a non-covered drug.

  2. Your hospital or treatment center, to see if they have a program to help patients when Medicare doesn't cover a drug your physician has prescribed.

  3. Astellas, maker of Prograf, about their Patient Assistance Program.

  4. The Georgetown Health Policy Institute, in case they can give you advice or direct you to resources. I've mentioned them because they've sent representative to AA&MDSIF patient conferences so I know they have an interest in helping patients, not just doing research.

  5. Medicare and/or your Plan D prescription provider, to go through their appeals process. Appeals can be a lot of trouble but those who persevere sometimes get coverage for drugs that were initially denied.
Good luck. Please post again to let us know what happens.
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Old Sat Jun 18, 2011, 03:34 PM
Sally D Sally D is offline
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Join Date: Jul 2010
Location: Fortuna, California
Posts: 10
Smile Medicare Plan D

Thank you Neil, for your excellent, expert advice on our dilemma with Medicare. We are marshaling our resources for a level three appeal before a judge. We just got an interesting court case from Medicare Rights, from New York called "Layzer vrs. Leavitt". The lawsuit claimed the plan should cover the drugs requested even if not listed on the FDA or the compendia. The suit was settled on March 7, 2011.

I haven't researched Prograf on the forums, but for me it creates many fewer side effects including kidney problems, than Cyclosporine.

You seem to be at a disadvantage if you have a rare disease. I feel so grateful that my counts are stable, I'm feeling energized again and can carry on with life.

Thank you again,
Sally D
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Sally, diag. VSAA summer '08, ATG and Cyclo. Benign brain tumor 9/09 removed, relapse SAA, treated 5/10. Good response plus Prograf.
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  #4  
Old Thu Oct 27, 2011, 12:00 AM
usaf1125 usaf1125 is offline
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Join Date: Dec 2007
Location: Stoughton, MA
Posts: 66
Smile insurance, finance

Contact the Healthwell Foundation, if you qualify they may help you with the copayments www.HealthWellFoundation.org
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82 yr. old male. Diagnosed in 2003. Started Blood infusion 1/5/2004, average of 2 units every 2 weeks. Inject Procrit weekly 40,000 ML. I have had 344 units of PRC. E Mail leojean@comcast.net
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