Some of the most common questions received by Myotonic involve issues with health insurance coverage for people living with myotonic dystrophy (DM). People living with DM often struggle with securing coverage for costs associated with genetic testing, procedures, medications, durable medical equipment, and everything in between. It can often be difficult and frustrating to understand what a health insurance policy does and does not cover, and to obtain proper authorization for the appropriate, medically necessary level of care.

The problem obtaining proper authorization often stems from the unfamiliarity that healthcare providers and insurance companies have about the diagnoses, symptoms, and medical needs associated with DM. Myotonic dystrophy symptoms are similar to those of other chronic diseases, so misdiagnosis is common and insurance companies often fail to cover the costs associated with treating DM. For example, because it’s difficult to obtain coverage for genetic testing, it can take over seven years for people with myotonic dystrophy type 1 (DM1) to be diagnosed and 11-14 years to confirm a myotonic dystrophy type 2 (DM2) diagnosis. Even after individuals are diagnosed, they often struggle to obtain coverage for durable medical equipment and medications to manage their symptoms.

To overcome barriers to insurance coverage, it’s important to understand health insurance plans, the language of the health insurance industry, and where to go for help. This resource guide may help you navigate the process of making sure your medical treatments and medications are covered, as well as understand how to appeal your claim if it’s denied. We hope that this guide will enable you to advocate for the delivery of healthcare services and treatments that enhance your health and well-being and that of all people living with DM.