March 2021 saw the first ever virtual Public Policy Conference (PPC). While PPC is usually held in person in Washington, DC, this year required changes to gather MS activists to learn, connect with each other and engage with Congress, while also keeping everyone safe. Thanks to supporters like you, the Society was able to pivot quickly and invest in an interactive virtual platform to make the 30th
annual PPC a great experience. With your help, we took the challenge, thought differently, acted boldly, and succeeded!
We engaged more people at one event than ever before with 888 participants, triple the number we can accommodate at the in-person conference. More than 70% rated their virtual PPC experience as excellent or extraordinary. This inspired 400 people to sign up as new MS activists, bringing our total to 34,222 Action Alert members. These record numbers make our movement stronger and our voices louder, leading to more meetings with elected officials, more opportunities to tell our stories and influence legislation to improve quality of life for people affected by MS.
Clear messages for change and tools to educate elected officials leads to advocacy success. PPC highlighted two big issues this year: expanded access to telehealth and continued funding of the Department of Defense MS Research Program (MSRP). Over the past year, we have all seen the benefits of telehealth and are urging our representatives to support expansion of telehealth, even after the pandemic. The Society is also advocating for $20 million in funding for the MSRP, the only federal funding stream specifically for MS research.
Increasing Funding for High-Risk Research Can Garner High Rewards
The MS Research Program (MSRP), part of the Congressional Directed Medical Research Program (CDMRP), in the Department of Defense is unique in that it seeks to fund high-risk, high-reward projects compared to other funding entities. By sponsoring projects with less preliminary data, the MSRP supports the most innovative research with high-impact outcomes that are critically important for making real changes in the lives of people with MS.
Since its conception in 2009, the MSRP has funded 111 awards, 98 projects, 4 clinical trials, and 3 patents- all focused on improving the quality of life for people living with MS.
At this year’s PPC, we heard from Dr. Leigh Charvet, a neurology professor at the NYU School of Medicine, whose MSRP and Society-funded research focuses on whether non-invasive brain stimulation paired with rehabilitative exercises can improve learning in a hand training program. Thanks to this combined funding, her high-risk, high-reward project has great potential to help people with MS restore function.
Incidentally, Dr. Charvet’s research has also shown the importance of another key issue discussed at PPC this year: telehealth. With a background in telehealth, Dr. Charvet quickly pivoted to telerehabilitation to continue her study by administering treatment remotely throughout the pandemic. Dr. Charvet has seen firsthand the need for expanded telehealth services and has been inspired by how accessible rehabilitation can become when it, like so many other things in our world, goes virtual.
Expanding Telehealth Expands Access to Care
When in-person doctor’s visits became a risk for COVID-19 exposure, but delaying a visit risked poor health outcomes, telehealth became the obvious solution to keep people safe and healthy. In response to the emergency situation of the pandemic, the federal government waived many restrictions that had previously limited telehealth. However, it is uncertain whether these temporary measures will continue after the pandemic, so at this year’s PPC, MS Activists asked for their elected officials’ support to expand access to telehealth as more evidence shows benefits for both patients and healthcare providers.
For Kristen O’Toole, who was diagnosed with MS in 2014, getting to a doctor’s visit during the pandemic was challenging since she relies on public transportation, which did not seem like a safe option. When she scheduled her first virtual physical therapy appointment, she was skeptical - how helpful could physical therapy be if it was not in person? However, after just one appointment Kristen found that not only was it vital in keeping her strength up, but it also helped her feel less isolated. When she recently resumed in-person therapy after a year of telehealth, she said, “I didn’t miss a beat!” and feels more confident that she now has both options to choose from.
Kristen is not alone in seeing the benefits of telehealth: across the board, patients and providers are reporting that telehealth is a great option. Dr. Mitch Wallin, Associate Professor of Neurology at Georgetown University and Director for the Veterans Affairs MS Center of Excellence in the East, shared the results of a study polling people living with MS and healthcare providers about their telehealth experiences.
80% of people living with MS who were surveyed said they’d want to continue telehealth after the pandemic.
These are some of the many reasons MS activists are seeking support from elected officials to expand access to telehealth so that people living with MS still have this as an option as we move forward.