In giving the award to Cyndi Zagieboylo, the Chief Executive Officer of the National MS Society, ICER President Steven D. Pearson, MD, MSc, noted, “For decades the National MS Society has demonstrated a strong commitment to ensuring that individuals with MS have what they need to live their best lives. One way they achieve this goal is by taking a leadership role in comparative effectiveness research. They have helped mobilize patient participation in research, worked with researchers to design patient-centered outcome measures, and, very notably, they have taken a strong stand in calling for evidence to be applied to change pricing and insurance coverage policies to improve access to appropriate care for every person in the diverse community of individuals living with MS. This kind of leadership is not easy, but the Society has stayed the course. It is therefore a privilege for ICER to recognize the impact they have had, and to highlight the example they represent of the leadership role that can be taken by the patient community in comparative effectiveness research.”
The Society has made numerous contributions to comparative effectiveness research. They have supported critical studies exploring the cost-effectiveness of the MS disease modifying treatments, as well as MS cohort studies that have yielded a wealth of information about the experience of many individuals with MS. These studies include ongoing analyses of the risks and benefits of treatments, cost escalation of drugs, and patients’ perception of value in pharmaceuticals. The Society has advocated for research that includes patients’ perspectives and has supported patient-powered research networks, such as the iConquerMS database directed by the Accelerated Cure Project for MS.
“I’m honored to accept this award on behalf of people living with MS and all the volunteers and staff who lead the MS movement to achieve a world free of MS. The National MS Society exists to ensure that people affected by MS can live their best lives as we stop MS in its tracks, restore what has been lost, and end MS forever,” noted Cynthia Zagieboylo, President and CEO of the Society. “The National MS Society is dedicated to ensuring that patient-centered outcomes are included in the data that guides development, comparison, and use of innovative therapies to treat the disease of MS.”
By advocating for inclusion of patient-centered outcomes in clinical research, funding studies that focus on patient-centered outcomes, and offering insights and expertise to ensure that researchers consider the outcomes of primary importance to patients when developing new studies, the National MS Society exemplifies an organization working to advance comparative effectiveness research in the country.
Ms. Zagieboylo accepted the award on behalf of the National MS Society earlier this month during a dinner in Boston attended by leading representatives of the comparative effectiveness research and policy community.