I was in Washington, D.C. for a meeting, and had the opportunity to dine with some fellow multiple sclerosis advocates. I thought it might be of interest to get their take on the most pressing issues of 2017 for people living with MS. I wasn’t sure what to expect when I asked the question “What would you like to see in 2017 for people with MS?”
At the table were people who devote a lot of their time to improving life with MS. Seth Morgan, Karen Jackson and Lisa Emrich, all of whom volunteer on behalf of the National MS Society and additionally as members of the governance board of iConquerMS. Sara Loud, the project manager for iConquerMS and chief operating officer for the Accelerated Cure Project, also was at this dinner. Sara and I had traveled for a separate meeting and the others live in the greater D.C. area
Seth led off and talked about his interest in allowing caregivers respite from doing 24/7 care. “We should fund ways to support nurses to come into homes and give caregivers a break — this should be daily, so we can prevent or slow down caregiver burnout.”
Karen, who uses a motorized wheelchair for mobility, would like to see enhancements in public transportation and noted how improved access can improve the social connections. Karen uses the D.C. Metro subway system, but also has her own van with hand controls to get around, but noted most people are not that fortunate to have either.
Karen also suggested she would really like to see the spread of tele-health to deliver care and service to people who either live in remote areas or are unable, due to lack of appropriate transportation, to get to all of their medical appointments. “Reaching out to people with how they can access services is important, but we also have to recognize telemedicine would not be the best for everyone” said Karen. She went on to cite a person she knows who leaves her home only to see her doctors, and if she didn’t have that outlet, she would never leave her house. Seth added that it’s important that “telemedicine would be adjunct to regular care,” and people would still need to see their doctors and nurses in person.
Sara would like to see more funding for research in areas of wellness. “I think the focus on keeping people with MS active is an important objective and deserves to receive more attention.”
We got into comparing recent bills for our disease-modifying therapies. I am on Tysabri, but three others who have MS at the table are taking Rituxan. When Karen said she has her infusion in an MS specialty clinic hospital setting, and is only $60,000 versus much more for Lisa, Seth had to ask “Did you ever in a thousand years think you would ever say something was ONLY $60,000?” drawing a laugh and a sigh from all. It was unanimous at the table that the cost of disease-modifying therapies would be an important problem to tackle in 2017, but no one holds much hope that will become a reality.
Lisa wrapped up her wish for 2017 as a desire for “more patient involvement in choosing the direction of progress of funding for research, especially in engagement with the National MS Society.” She explained she would like people with MS to have a say on how those dollars earned for NMSS are spent.
They turned the tables and asked for my idea to improve the needs of MS patients in the future. I shared that I would like to find ways to connect everyone who has MS with another person who also has the disease. The isolation that comes from this disease is hard on our emotional and mental health, and I know that can be helped by connecting with others who understand MS as only a person with this disease can. I expressed my gratitude to all of them for being my connections and support and how all of us benefit from knowing others affected by MS.
So, there it is: These MS thought-leaders say their top action items are transportation, access to specialist care via telemedicine, addressing drug costs, connecting with others, and support for caregivers deserve more focus, effort and resources. What do you think should be added to this list? It never hurts to dream big!
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