By Michelle Greer, RN, MBA
The Myositis Association held its annual patient meeting in Louisville, KY., October 17 through 20. The meeting was very informative with a lot of sessions for people with polymyositis (PM), dermatomyositis (DM) and inclusion body myositis (IBM). While there are various treatment options available for people with PM and DM, including intravenous immune globulin (IVIG), currently there is no treatment for IBM. However, some interesting things regarding IBM were discussed.
An international, multicenter trial sponsored by Novartis is being conducted to evaluate the safety and efficacy of a new drug, Bimagrumab/BYM338, for treatment of sIBM (sporadic IBM). The goal of this treatment is to improve walking. The researchers are currently recruiting for this trial and are looking for 240 participants. Sixty of the participants will receive the drug at a high dose, 60 will receive a mid dose, 60 will receive a low dose, and 60 will receive a placebo. The trial is a double-blind study, meaning both the participants and investigators will not know which dosing they will receive. There is quite a bit of inclusion and exclusion criteria, which along with additional information, can be found here.
For many people with IBM, physical therapy (PT) is the major and even sole aspect of their treatment regimen. Most insurance companies have a cap on the amount of PT allowed per calendar year, and additional criteria may exist. One such criterion is the expectation that there will be improvement as a result of PT. For people with IBM, improvement may not happen, but PT can certainly slow or prevent loss of function. Recently, there was a class action lawsuit against Centers for Medicare and Medicaid Services (CMS) to allow for unlimited PT for people with chronic conditions like IBM, and to allow PT to continue even if there is no expectation of improvement. If you have IBM and are covered by Medicare, you can continue PT indefinitely in an outpatient setting, at home or in a skilled nursing facility. There is a self-help packet on navigating through denials if they continue on the Centers for Medicare Advocacy website.
Overall, the meeting was very well-attended and a great success. If you have a form of myositis and want to connect with others with the same condition, want more information on the condition, treatment and trials, or want to get involved in a local patient group, contact The Myositis Association through its website at myositis.org.
