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Old Sat Jun 2, 2007, 05:45 PM
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How to send comments to the CMS

Let the Centers for Medicare and Medicaid Services know your opinion about the proposal CAG-00383N.

To comment on this proposal, use their public comment form. You must submit this form by Wednesday, June 13.

The CMS wants individual messages, not form letters, so tell your personal story and describe how you would be personally affected if you no longer had coverage for growth factors for MDS.

Make it clear that you oppose the proposed change because it would apply to MDS.


How to contact your congressional representatives

Urge your representatives to make sure that CMS decisions about drug coverage are based on the latest medical research, and ask them to oppose the CMS proposal that could lead to loss of Medicare coverage for growth factors used in treating MDS.

You can find your representatives here:
U.S. House of Representatives

U.S. Senate
Below is a sample letter you can use.

Email or fax your letter to your Representative and Senators. Do not send postal mail or courier mail because mail delivered to Congressional offices must be irradiated and can take weeks to arrive. This is a time-sensitive issue!

Sample letter:
Dear (Member of Congress):

I am writing to express my concerns about a recent proposal by the Centers for Medicare and Medicaid Services (CMS) to remove Medicare coverage for erythropoiesis-stimulating agents (ESAs) for the treatment of anemia of myelodysplasia or myelodysplastic syndromes (MDS). The proposal title is "Erythropoiesis Stimulating Agents (ESAs) for non-renal disease indications (CAG-00383N)."

(Tell personal story about how you or your loved one has MDS and how you want to make sure it is available when you or your loved one needs it. Explain if you have ever taken growth factors and the benefits of the growth factors if that is the case.)

Recent concerns have been raised by both CMS and the Food and Drug Administration (FDA) about the overuse of ESAs in treating anemia that results from chemotherapy. These concerns may be valid for other disease groups, but, as the FDA noted, they do not apply to individuals like me/my loved one suffering from bone marrow failure diseases like MDS. As noted by the Aplastic Anemia and MDS International Foundation, the MDS Foundation, and the American Society of Hematology in their public comments to CMS, several studies support the use of ESAs in MDS patients. No adverse effects from the use of ESAs in this patient population are known, and ESAs have a preferable risk-benefit ratio compared to blood transfusions. Studies used by CMS to justify their findings did NOT include MDS or other patients with bone marrow failure diseases.

CMS's ESA coverage proposal is simply not supported by science with respect to MDS. On behalf of your constituents affected by this proposal, please contact CMS and remind them that they must make their decisions based on scientific research and that you support preserving Medicare coverage of ESA treatment for MDS. Without proper scientific justification, CMS must not change its coverage policy for this vital MDS treatment.

Sincerely,
(Your Name)
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