Oregon Fulfills Its Obligations to Duchenne Patients (For Now)

  Posted on October 14, 2017

The most recent victory in securing access to treatment for individuals with Duchenne muscular dystrophy in Oregon came as state and national advocates offered compelling evidence to the Oregon Health Evidence Review Commission Board Meeting as to why Exondys 51 should be covered by the state. For now, the state is listening.

Clearly, DMD advocates and moms Jamie Ambuehl, Hannah Cain, and Jenn McNary, as well as Dr. Erika Finanger, MD, presented a persuasive case for the reasons the drug must be approved immediately. It’s hard to say no when the evidence is so strong that these kids deserve this treatment.

While moms like Jamie and Jenn spoke of the importance of this treatment to their children’s health, Dr. Finanger informed the committee about the medical benefits she has seen both in her patients and in her studies of the treatment. In short, this is an FDA approved drug and most states already recognize this. Meanwhile, moms like Hannah Cain whose child was just diagnosed with DMD, presented the painstaking agony of knowing a drug to treat her child is now available, but simply hanging in the balance of political reviews in order for her to access it. Members of the committee listened with sincere interest to the amazing achievements made by this medical breakthrough and the obligation of states like Oregon to cover it without delay.

The Oregon Drug Utilization Review Board’s Pharmacy and Therapeutics Committee previously approved Exondys 51 pending review from the Oregon Health Evidence Review Commission Board Hearing. Since the board did not immediately decline access and were so enthralled by the compelling cases demonstrated during the hearing, it is a promising sign that this final step will lean in the direction of permanent approval. Due to the reaction of this board, it is hard to imagine that Oregon will trail far behind the federal review process.

We are moving forward and will help ensure that Oregon families get the care that they need and deserve. We’re confident the HERC will join us in this effort.