October 5th, 2018: Irvine, CA
Executive Director, Vanessa Vogel-Falrley, attended the All-Stakeholder Access to Critical Therapies Summit put on by a partnership between Child Neurology Foundation and Global Genes.
The issue of access has huge implications for every health system stakeholder – patients, providers, payers, government, industry and investors – from ‘downstream’ at the point of care and access to current treatments, to ‘upstream’ at the point of innovation and investment to develop new therapies. Patients and caregivers clearly have the most to gain, or lose, based on how we go about addressing this issue in the U.S. This is especially true for those with rare and complex diseases. Here treatment options are few and far between, and often extremely expensive if available, in part because of the cost and risks associated with developing drugs for very small patient populations and in treatment areas such as neurology where failure rates are very high.
The Stakeholder Summit aimed to address these challenges openly, and identify potential pathways or solutions to protect the near- and longer-term interests and lives of our disease community. The Summit discussed and explored actions that can be undertaken at a community level to assess the value of therapies -- with patient needs, experiences, and outcomes at the center.
With the critical nature of the issue the strong participation that was present at this meeting was very inspiring!