People with DM are often denied coverage for medications and services that are not listed in their insurance formularies. Because DM is a rare disease, insurance companies are often not aware of the symptom management strategies that are medically necessary for people living with DM. Health insurers often deny claims because they think that certain services are not medically necessary, or because they view them as experimental or investigational for people with DM.

Below is a list of medical services that are commonly denied for DM care:

Medications:

• Modafinil (Provigil) and Armodafinil (Nuvigil): Treat excessive daytime sleepiness and sleep apnea.

Durable Medical Equipment:

• BiPap: Ventilator that helps with breathing and treating sleep apnea.
• Electric lifts (toilet seat lift, lift chair, lift for bathtub, etc.): Helps manage myotonia, atrophy, and/or myopathy.
• Braces (leg, knee, foot, etc.): Helps manage myotonia, atrophy, and/or myopathy.

Genetic Testing:

• People showing DM symptoms often have difficulty getting coverage for genetic testing to confirm diagnosis.
• Family members of people diagnosed with DM often struggle with getting coverage for genetic testing to determine whether they have DM as well. This can occur because their symptoms may not be as prominent as their family member who was diagnosed.

Specialists:

• Depending on the type of insurance an individual has, it can be difficult to get coverage for specialists, especially if that specialist is out-of-network.

In Vitro Fertilization:

• Many people living with DM experience fertility difficulties, but it is difficult to get in vitro fertilization covered by their insurance company.
• In vitro fertilization is helpful for individuals who want to have children but who may experience the reproductive-related symptoms of myotonic dystrophy, including low sperm count, higher risk for miscarriage and stillbirth, or problems with pregnancy.
• Preimplantation genetic diagnosis (PGD) may be part of the in vitro fertilization process, if there is family history of DM. This test examines embryos that were fertilized using IVF for genetic abnormalities before the embryo is transferred into a woman’s uterus.

Filing a claim or an appeal with your insurance company can help to increase coverage.