By Michelle Greer, RN, MBA
Myasthenia gravis (MG) is believed to be an autoimmune disorder. An autoimmune disorder occurs when the immune system malfunctions and creates antibodies that attack and cause damage to a part of the body. In MG, acetylcholine receptors at the junction between the nerve and the muscle are attacked. Acetylcholine is a neurotransmitter. If acetylcholine receptors are attacked, the nerve transmission is interrupted or ineffective, which results in muscle weakness. Because MG affects the voluntary muscles, movements such as blinking, chewing, swallowing and holding one’s head up become difficult. Additional symptoms may include droopy eyes and slurred speech. People with MG can experience periods when symptoms are relatively controlled, as well as periods of exacerbation or worsening. In some cases, exacerbations can happen rapidly and require quick intervention. Severe exacerbations can affect swallowing to the point where aspiration (inhaling something such as food into the lungs) can occur and can become dangerous. Breathing can also become affected.
MG is treated with steroids, immunosuppressants, intravenous immune globulin (IVIG) and plasmapheresis. Steroids and immunosuppressants are used as maintenance therapies, and IVIG and plasmapheresis are used to treat exacerbations. However, there are many people who can’t take steroids and/or immunosuppressants or they exacerbate in spite of being treated with these therapies.
Over the last several years, people seem to remain on IVIG as a maintenance therapy. Unfortunately, insurance companies will not pay for IVIG for long-term therapy for MG. Payers have polices that outline how IVIG is covered in various conditions, and they base this coverage on studies that have been conducted and published. There are no studies or published data that discuss the efficacy of IVIG as maintenance therapy in MG. This doesn’t mean it isn’t effective for some people, but it does make getting coverage challenging and a bit scary.
Have you had IVIG for MG long-term? What are your challenges with coverage?