Advocacy to make others aware of myositis is an important function of The Myositis Association. It includes public educational events to create awareness about the disease, lobbying legislators to inform them of the public policy concerns of those who have myositis, and media events to bring media attention to the disease and inform the public about myositis.
TMA advocacy in recent years has focused on:
Access to Myositis Treatment
Proclamations passed at the state level to recognize September 21 as Myositis Awareness Day.
Encouraging Congress to pass a resolution recognizing National Myositis Awareness Day. In 2006, TMA was successful in getting the U.S. House of Representatives to pass House Resolution 974 recognizing National Myositis Awareness Day. Fifty Three Members of Congress were co-sponsors of the resolution.
Lobbying Congress and the Obama Administration to adjust reimbursement for IVIG under the Medicare program to make this important treatment affordable for physicians to administer in their office and for hospital outpatient departments to be able to provide economically. Position papers and letters to Congress and the Secretary of Health and Human Services have been used to encourage action to address this crisis.
Advocacy is an activity that requires leadership from TMA's national office and grassroots support from TMA members. Everyone has a role to play in advocacy. Click here to see an example of how a person with myositis can use local media to gain attention for the disease.
Updated March 2012