If you make four copies of the following letter and send it to the addresses listed below, we may avert a medical disaster that will cost more in emergency and hospital treatment than any "savings" derived from this ill-conceived policy.
LW
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Dear Sir or Madam:
I am a patient with carcinoid cancer, also called neuroendocrine tumor. A drug called Sandostatin (octreotide) alleviates some symptoms of my cancer, such as incapacitating diarrhea, wheezing, stomach cramps, heart palpitations, low blood pressure and frequent "flushing" characterized by an uncomfortable red rash that looks like sunburn on the face and upper body.
Recently, Medicare began refusing to pay for more than one 30 mg dose of Sandostatin LAR per month. This is far too little of the medication for many carcinoid patients. Apparently, Medicare's policy is based on FDA guidelines provided by the drug manufacturer, Novartis.
This misguided recommendation by the FDA obviously was made without input from medical experts familiar with this disease. If carcinoid patients suddenly are forced to receive less medication, the results will be life-threatening for some. Trying to cover the cost of additional Sandostatin could cost some patients more than $30,000 a month!
Medicare patients can appeal to their individual drug plans for adjustments in their medication but this will require considerable paperwork and time. Patients dependent on higher doses of Sandostatin LAR don't have time on their side.
Please demand a swift and complete reversal of this potentially harmful policy and the institution of a new policy that covers the cost of Sandostatin LAR in the doses carcinoid patients require.
Signed,
Dr. Donald Berwick, M.D.Administrator
Centers for Medicare and Medicaid Services
7500 Security Boulevard
Baltimore, MD 21244
The Hon. Kathleen Sebelius, Secretary
U.S. Dept. of Health and Human Services
200 Independence Ave. S.W.
Washington, D.C. 20201
Dr. Suzette Lazo, Director
U.S. Food and Drug Administration
10903 New Hampshire Ave
Silver Spring, MD 20993-0002
Christy Shaw
North American Region
Novartis Oncology
One Health Plaza
East Hanover, NJ 07936
