Equity and MS
I'm an engineer looking beyond the bench towards where I can have a greater impact to help people with MS, and was wondering what were the current biggest barriers for people - diagnosis, drugs, logistics (i.e. travel, parking), etc.
I would love to hear where the community thinks researchers and decision-makers can do the most good, especially for those under-represented/under-served in most studies/major healthcare systems. Thank you.
Hi,
! I hope you get some helpful feedback from the community as to what matters most to them. You'll probably get a variety of answers, but at the risk of being presumptuous, I can take a guess at what many folks with MS are looking for.
1) A cure
2)Better treatments with less side effects
3) Affordable/accessible treatments
4)better visibility and understanding about MS
Now, after the number 1 desire I shared, I think the other three can be moved around as far as importance. And, I don't think this list is complete. If you ask 100 people, you may get 100 different answers. Certain people really struggle with getting safely to and from appointments. Many folks find the treatments very expensive. And others find the side effects to be unmanageable. And minority communities (people of color, LGTBQIA+ folks, etc) have their own concerns when it comes to understanding, education, research, and representation. Groups like the National Multiple Sclerosis Society -- https://www.nationalmssociety.org/ and the Multiple Sclerosis Association or America -- https://mymsaa.org/ are doing great work in the MS communities, but I think there's always room for more willing people to share their time and talents to make life better for people living with MS!
Best, Erin, MultipleSclerosis.net Team Member.
