On Tuesday 13th of September 2016 Duchenne UK held a workshop to address the challenge of reimbursement - and how we can work with bodies like NICE (HTA) to agree to reimburse or pay for therapies that treat Duchenne Muscular Dystrophy (DMD).

We were joined by many in the pharmaceutical industry working on treatments for DMD, parents of children with Duchenne, our charity partners and others.

The morning workshop was hosted by Anthony Hatswell from Bresmed and focused on what the  Health Technology Assessment (HTA) Process is, and how health economics works.

The afternoon workshop looked at how as a community we can gather the best evidence and disease model for DMD which can be used by the Pharmaceutical industry to help strengthen the case at HTA review.

Ron Akehurst from Bresmed explained the NICE review of treatments for Duchenne to date. This has particular relevance in the UK because NICE is the body that decides which drugs are funded.

Duchenne UK would like to thank all those who attended.

It was an educational and insightful day bringing together parents, researchers and those from the pharmaceutical industry to share knowledge and experience.

In this attachment is a summary of the day’s discussions and a plan for next steps on this journey.