March 27, 2018 / Care,Research

Center Directors Publish Collective Statement Regarding Patient Access to Approved Therapies

PPMD is proud to announce the publication of a collective statement regarding patient access to approved therapies from the center directors of our Certified Duchenne Care Centers.

There are many ongoing treatment trials for Duchenne and of course it is likely that the treatment options will continue to grow. Recent medical and pharmacy benefit policies from health insurers reviewing Duchenne products have been written with limited input from neuromuscular specialists directly involved in patient care, and without patient input. This has resulted in excessive variability between payers (public and private insurers) and a high rate of denials, even for patients who received initial approval and have begun treatment. This has been frustrating for patients, parents, and neuromuscular specialists, and these policies may delay treatment resulting in irreversible disease progression.

In order to ensure that policy determinations reflect best clinical practice, the clinic directors of the Certified Duchenne Care Centers developed a consensus statement imploring insurers to work with neuromuscular specialists leading the PPMD Certified Duchenne Care Center teams, as well as patients and families, in developing policies.  As part of our mission to end Duchenne, we strive to ensure access to approved therapies. To that end, we are actively working to shift this existing paradigm and are eager to engage with payers to develop policies that will improve health outcomes for patients with Duchenne. A link to this consensus statement can be found here.

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