Welcome to Issue 3!
This week Patients Rising Now went live with a conversation about Duchenne Muscular Dystrophy and the organization ICER. It went well! Very conversational. Also, very timely. It needed to be talked about now because the deadline for public comments on ICER’s report regarding treatments for Duchenne is June 18th 2019 at 5:00pm EST.
Why is it so important to be heard? The Institute for Clinical and Economic Review (ICER) create reports that can often lead to decisions not to cover certain treatments for patients. When those patients have a rare or ultra rare disease like, Duchenne Muscular Dystrophy, their treatment options are already limited, and each new innovation is anticipated by certain segments of the community. The last thing they need is an unregulated group -- without any experts in the disease state voting -- coming together to say the cost of treatment isn’t worth it.
Patients Rising and Patients Rising Now are, as they have always been, about people. About putting the voice of the patient at the front of health debates. Large corporations and detached policy makers, even when their intentions are not selfish, can never really empathize with what a sick person is going through. This is why we exist – to make sure policy decisions don’t get made without first hearing what patients have to say.
What do you have to say? You can always share your story to us by following this link. We may even develop it into an article.
-- Terry
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