GIST Support WikiThe following is a copy of pertinent sections of an appeal letter written by Richard Palmer, a GIST patient from Hawaii, copied with his permission, in the hopes that it can help someone else in this situation. He cites medical source references to back up his appeal of the denial of his PET and I found it really excellent. His appeal was successful.
In this sample Richard's specifics have been removed, and blanks have been inserted for others to use as a guideline to insert their own information. Fill in your own insurance company, dates and doctors.
To:_______________________
From:_____________________
Date:_____________________
Re:_______________________
CT scans done on dates _____ and ____ show that my GIST may be developing some resistance to Gleevec. My oncologist, Dr. ________, one of few GIST experts in the nation, ordered a PET/CT to clarify this. _____'s unprecedented denial of this critical diagnostic tool clouds and indeed limits my treatment options. I am surprised ____ wants to assume responsibility for determining my course of treatment.
I do understand my cancer’s rarity means most doctors, and many oncologists, simply can’t stay abreast of the latest therapies and courses of treatment for GIST. I hope ____’s denial stemmed from outdated or insufficient information.
I would note the American Cancer Society says PET “has become one of the most useful tests for spotting GIST.” The ACS notes PET is used “for an accurate assessment of tumor spread and whether it is responding to drug treatment.” (1)
The journal Applied Radiology (vol. 34, no. 6, 2005), in an article titled 'Role of Positron Emission Tomographic Imaging in Gastrointestinal Stromal Tumors,' cited case studies where PET 'helped in accurate re-staging by indicating the malignant nature of the hepatic and subhepatic masses and excluding pelvic spread.' The article also noted that, 'when compared with CT alone, PET with FDG and PET/CT provided valuable additional information about the extent and metabolic activity of the disease process. … The advantage of PET lies in its ability to differentiate active tumor from a nonviable necrotic tumor mass, malignant from benign tissue, and recurrent tumor from scar tissue.' (2)
In May 2006, the National Comprehensive Cancer Network updated its Soft Tissue Sarcoma Guidelines. As you know, the NCCN Clinical Practice Guidelines in Oncology is the standard for clinical policy in oncology. These revised guidelines specifically state that 'CT can be ambiguous, but PET is more definitive' in assessing response to therapy and in determining progression. (3)
A PET scan can reveal if my cancer is only partially resistant to Gleevec while remaining largely controlled by Gleevec. (4) Indeed, PET has even been deemed the best way to monitor GIST during Gleevec therapy. (5)
Bottom line, a PET scan will provide much-needed information on whether to increase my Gleevec dosage, consider surgery, switch to Sutent (the only other FDA-approved drug for GIST), or perhaps seek another clinical trial.
Please consider this my formal appeal of _______’s denial of my PET scan. I also request expedited review of this denial, given that my cancer is life threatening. If ______ allows this denial to stand, I request the medical basis for this decision, in writing.
Sincerely,
___________________
(2) http://www.medscape.com/viewarticle/506505_1
(3) http://www.nccn.org/professionals/physician_gls/PDF/sarcoma.pdf
(4) Consensus meeting for the management of gastrointestinal stromal tumors, Annals of Oncology 2005, Vol. 16, No. 4: 566-578. link to full text
(5) Jager PL, Gietema JA, Van Der Graaf WT. Imatinib mesylate for the treatment of gastrointestinal stromal tumours: best monitored with FDG PET. Nucl Med Commun 2004; 25: 433–438. abstract in PubMed