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Old Fri Jul 15, 2011, 11:15 AM
Bob Macfarlane Bob Macfarlane is offline
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Join Date: Feb 2010
Location: Soutwest Ranches, Florida
Posts: 126
Request sent to National Cancer Institute

Robert James Macfarlane, Sr.
16611 SW 49th Street
Southwest Ranches, FL 33331-1325
954-232-7190
AirAmrka@aol.com


June 18, 2011

National Cancer Institute
Public Inquiries Office, Suite 3036A
6116 Executive Boulevard, MSC8322
Bethesda, MD 20892-8322

Dear Sir/Madam,

From your website http://www.seer.cancer.gov/about/ I read that:

SEER collects data on cancer (emphasis mine) cases from various locations and sources throughout the United States. Data collection began in 1973 with a limited amount of registries and continues to expand to include even more areas and demographics today.

Would you be so kind to explain to me, in writing and over signature, why the National Cancer Institute collects data on Myelodysplastic Syndrome? Certain government agencies only consider MDS to be a pesky form of anemia, which might turn into cancer.

Yet, the majority of the medical community considers not only AML but also MDS to be a diagnosis of cancer.

Words do have meaning and I would like to know if MDS (not AML) should be considered anemia or cancer. Would also like to know, if it is not cancer, why is the NCI using taxpayer money to collect data on anemia?

You may forego the explanation of “pre-leukemia.” That term is one of the biggest disservices ever placed upon MDS patients. It has allowed insurance companies and government agencies to deny coverage and/or compensation for years.

If necessary, just notify me and I will be happy to submit this as a Freedom of Information Act request.

Respectfully,



Robert J. Macfarlane
RCMD-RS

Last edited by Bob Macfarlane : Fri Jul 15, 2011 at 11:32 AM. Reason: color
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