Up Front: Information, Advocacy, and Collective Impact
By Douglas G. Franklin
MSAA President and CEO
This past winter has been particularly unpredictable and challenging, with record-breaking snowfalls and cold temperatures. These past few months have also proven unpredictable and challenging for our MS population, as individuals experience record-breaking changes in the healthcare system with the introduction of the Affordable Care Act (ACA).
Navigating this uncharted territory has been a challenge for many people with MS. MSAA has played a vital role in educating the MS community about the ACA, helping to bring clarity to these new, changing realities.
The Multiple Sclerosis Coalition’s (MSC) mission is to increase opportunities for cooperation and provide greater opportunity to leverage the effective use of resources for the benefit of the MS community. The MSC is comprised of eight organizations, including MSAA.
Additionally, through the MS Coalition (please see details at right), MSAA has been very involved with advocating for support for individuals with MS. This includes raising questions about decisions from the FDA on the subject of biosimilars and non-biologic complex drugs and their clinical standards, protocols to ensure consistency in the approval process, and opportunities for patient input. Please see our feature story on page 34 for more information.
We were also very active in responding to the FDA’s rejection of the drug Lemtrada® and an MS Coalition-supported appeal was made on behalf of all of our organizations. A major effort to help collect information on early and ongoing access to all disease-modifying therapies is currently in the works. This important work will summarize the current knowledge and evidence about disease modification in MS in the hope that we can ensure appropriate access to care.
MSAA and the MS Coalition are responding to all of these challenges with a renewed emphasis on “Collective Impact,” especially in the area of advocacy. We believe the deepening needs of people with MS will be a driving force to help us all realize a higher level of improving lives together.
Doug Franklin joined MSAA as President & CEO in 1999. He has a distinguished career in nonprofit leadership and is a former national trainer in strategic planning for the Peter Drucker Foundation. A published international expert in social marketing and corporate social investment, he is a graduate of four universities and holds dual certifications in two professional associations. He currently serves on the National Board of the Key Philanthropic Organizations Committee of the American Society of Association Executives and as President of the Multiple Sclerosis Coalition.