Earlier this year, Cure SMA initiated an insurance coverage and payment policy project, in partnership with District Policy Group. The goal of this project is to help facilitate a favorable public and commercial coverage and payment environment. Launched in anticipation of FDA approval of new SMA treatments, the project will cover the full range of care and treatment for all types, ages, and stages of SMA.
Through this project, Cure SMA will be advocating directly with key public, private, and state-based stakeholders to educate them on the need for access to, coverage for, and payment of SMA care and treatment. This will include a particular focus on the urgency of immediate coverage of new treatments as soon as they are approved.
We will also be engaging in targeted outreach to members of Congress, educating them on key developments in the SMA drug pipeline, and preparing for future engagement with policymakers once treatments are approved.
This project will also include communication and explanation for families affected by SMA. We know families will need support, resources, and guidance in understanding their respective insurance plans as well as navigating the coverage and payment system for them and their children, particularly as new therapies come forward for approval.
In early 2017, we will be releasing a new insurance and coverage care series booklet to our community. We will also be holding a webinar on this topic in the spring of 2017.
In addition, we will be announcing a new community survey in early December. This survey will cover a number of areas that are relevant to the real-world experiences of living with SMA.
The results of this survey will help us educate public and private payers on the impact of SMA, the potential benefits on an approved treatment, and the costs associated with treatment and care for SMA. At this very critical time, many of you have asked us how you can participate in the process. Participating in this survey will provide a tangible and measurable impact for our whole community.