My name is Gary and I have a rare Cancer known as Carcinoid. This disease causes horrible symptoms and left untreated can even cause heart failure. For me to live any type of normal life I need a drug manufactured by the company Novartis called Sandostatin LAR or Long Acting Repeatable. Once per month I trek to a cancer center and am injected with 2 30 mg shots of the drug in my behind. It hurts but it prevents me from the having 40 bowl movements a day of the explosive kind. I have been somewhat stable on this drug and have used it for 10 years.
I am on Medicare. I suddenly get a bill from them denying payment for two shots. They say the time indicated does not support the dose. I discovered later others are being denied, but only in certain regions of the country. I find out this is because in an insert the company is forced to include in the packaging a statement that there is no benefit beyond 30 mg per month. It do not know the full story behind this, and that is where our journey starts. I and others like me need your help and support. This drug can cost $8,000 per dose, and some of us need 2 shots every 2 weeks. Do the math. We don't think the healthcare law was intended in this way. In fact,we are all surprised as we were promised the government would not step between us and our doctor. I understand no physician treating patients was even spoken to about this policy.
I now have limited options in treatment. My only real one is to go down in dosage, get sick, do a test measuring the level of the medicine in my blood, and then resubmitting a request to overcome this issue. How would you like to have to do that to get the dose you know works for you for years? Could you live with some decision made by a faceless organization to deny access to the very thing which allows you to lead a normal life? I can't, and so I asked for help.
This blog exists now through the cooperation a number of individuals concerned about the sudden denial of the medication by regional offices of Medicare. Our hope is ask for your help with this simply by watching this blog and participating in surveys and calling and writing to Washington. We can only try to drive change, and if we do not try nothing will change and a lot of people will die due to a bad decision. Unless we all get involved, a lot of people are going to suffer and likely die because of this poor decision.
At the side of this blog are links leading to sites you can find who your representatives are. We hope to soon have a petition to sign, in the mean time write, call, or email your representative and let's stop thi in it's tracks before it prevents treatment to all of us. Also, included is a link (here) to a form letter for a start to the people who are in charge of this in Washington.
At the very least, please write to the department in Washington responsible for this at the following:
The Honorable Kathleen Sebelius, Secretary
Health and Human Services
200 Independent Ave. S.W.
Washington, D.C. 20201
Watch Secretary Sebelius talk about how Medicare will be "better."
Secretary Sebelius is responsible for Medicare. Please write or call Medicare and question the policy.
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