Protecting Rare Access to Off-Label Treatments

Have insurance companies or Medicaid refused to cover critical prescribed treatments claiming they were off-label and not “medically necessary”?

Is coverage denied because treatments that may work for you or your child are not on compendia – a compilation of evidence-based, off-label treatment options?

Nearly half of chemotherapy drugs prescribed today are off-label but there is a broad list of drugs that are covered because there was Congressional action. Join forces with other rare disease patients and other families to learn simple ways YOU can encourage Congressional action to make sure insurers and other payers can no longer deny coverage of needed off-label treatments for rare and ultra-rare disorders.

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