Filing Payer Appeals

All ECD treatments are still considered off-label treatments, meaning it often takes multiple appeals to gain approval from payers for ECD treatments in the US. In order to lessen the burden of this on the medical provider staff, example appeal letters and supporting journal articles have been assembled. The following information will provide guidance on the appeal process to achieve treatment coverage for your ECD patient.  For patients living outside the US, the process may be different to gain approval for a particular treatment.  However, the same information may still be helpful in getting approval for a particular treatment.

Working with insurance companies on a case-by-case basis requires much time and effort. The drugs that are used to treat Erdheim-Chester Disease are certainly no exception. Anakinra, vemurafenib, cladribine, and methotrexate are often prescribed to ECD patients. Most insurance companies have a list of drugs that require pre-authorization, and these drugs are typically on these lists. These drugs are costly and difficult for a patient to cover alone.

The typical evaluation process a payer uses is for a nurse or pharmacist to review the request and see if the drug is being requested for an FDA approved indication. When the drug fails to appear on the FDA approved list, the request is automatically denied. This puts the request into an appeal stage, usually going to a medical director for further evaluation. There is tremendous variability at this stage, but the request at this point is usually also denied. If the drug is finally approved, up to four appeals are sometimes required. When all internal appeals are exhausted, the patient has the right to ask for an outside review. This process is often stressful for the patient and time consuming for the doctors and staff.

In support of these efforts, a collection of articles and a letter of appeal have been created for the drugs often prescribed and denied coverage. The following links to drug articles and appeal letters have been created to assist medical staff in accomplishing treatment approval from the patient’s insurance carrier. Other doctors have been successful using these forms in application. The letters serve as a template guide to facilitate the appeals, while the articles support the request with medical facts and findings.

Important– Doctors and staff are advised to use code ICD-10 D76.3 which is “Other Histiocytosis Syndromes” and/or C96A “Histiocytic Sarcoma” for certain imaging studies (especially PET Scans) in applications for ECD treatment and monitoring.

If you should need more assistance with this process or would like to provide feedback, please contact the ECDGA.

Treatment Example Appeal Letter Supporting peer-reviewed article links (listed according to involvement)
Anakinra (Kineret) Letter Requesting Anakinra Treatment
Cladribine (Leustatin, Litak or Movectro) Letter Requesting Cladribine Treatment
Methotrexate (Trexall or Rheumatrex) Letter Requesting Methotrexate Treatment
Vemurafenib (Zelboraf) Letter Requesting Vemurafenib Treatment

*Full length version available upon request. To access these articles, please contact the organization.


Contact Us

Last updated: December 17, 2015

Contact Us

  • ECD Global Alliance, P.O. Box 775,
    DeRidder, LA 70634 USA

Featured Partners

Copyright 2017. All rights Reserved ECD GLOBAL ALLIANCE. A 501(c)(3) organization