If a bill goes before Congress and you never told members how their actions will impact you, how confident are you that they will vote in your favor?
As two people living with Multiple Sclerosis, this isn’t a chance we’re willing to take.
This is why we continue to advocate for ourselves – plus the nearly 1 million other Americans who have MS – and the reason we encourage other people (like you!) to get involved.
There is no better time to connect with your U.S. Senators and U.S. Representatives than when they are back in their home districts during August recess. And through the National Multiple Sclerosis Society’s advocacy efforts, we have two issues – one relating to accessible air travel and one to reform access to prescription drugs – to bring to their attention.
Join us for this episode of A Couple Takes on MS Podcast as we delve into the details of these issues, stress the importance of MS activism, and demonstrate how easy it is for you to get involved as an MS activist.
Action items we will take to our legislators after we schedule meetings with them or their in-district legislative aides are to:
- Address barriers to air travel accessibility by including provisions in the 2023 FAA Reauthorization that address access standards and the DOT’s complaints process for people with disabilities.
- Pass comprehensive pharmacy benefit manager reform this year that improves access to treatments that people need.
To help get you fired up about advocacy, we open the episode reading an excerpt from Jennifer’s Op Ed piece, Why Congress must pick up where the ADA got grounded with airline accessibility, that appeared in the Morning Sun newspaper.
Here are the links we reference for you to follow up on:
• Jennifer’s Op Ed: Airline accessibility is an equal rights issue – Read the full text of Jennifer’s Op Ed essay.
• Barriers to air travel accessibility fact sheet – Details about the importance of addressing this issue.
• Pharmacy Benefit Manager informational fact sheet – Background about why this legislation is needed
• Become an MS activist – Get specifics on how you can get involves with the National MS Society as an MS activist
Good morning Jennifer and Dan,
Between the MRIs and LP, MS started wrecking havoc on my body in my mid 20’s if not earlier. Nobody’s fault but mine. Fluffed off all the symptoms, had a answer for each one. Didn’t have time to be sick. Was just too busy with work at the management & executive level and inability to say “No” when asked to take on some of my superior’s responsibilities as well as take their place in committees, etc. simply because they didn’t want to anymore.
Main priority was raising my daughter (ex-husband made occasional visits for 20 minutes at the most , or none for a year or more at time. Just as well, abusive lunatic – stories for another time – truth is very stranger fiction).
Late 2021 to early 2022, everything went sideways very fast. Remember being in a Rehab Hospital in March of 2022 for intense PT, OT, speech therapy and Methylprednisolone infusions. Wonderful clinical and support staff made learning how to walk and talk fun. When I was able to smile and finally laugh, that’s what we did during our sessions and when they had time before the next patient, they’d relax in my room and laugh.
Definitely would not have made half the progress if I didn’t have the opportunity to be admitted in the Rehab Hospital requested by a few family members and my daughter (now grown up, on the upswing of 30 and an LSW at DCF for the Commonwealth of MA)
That being said, I was finally diagnosed with RRMS and SPMS in March 2022 at 51 yrs old. Even though I’ve had MS for over half a my life, it’s all very new to me. I’ve only had 3 DMT infusions to date.
Your post and the outline of your plan is intriguing.
There’s quite a bit to review and hopefully be able grasp your ideas and plans. Cognitive function hasn’t been terrific as of the past few weeks. Multiple days in a row with zero sleep is most likely exacerbating things.
Apologies for the rambling comment.
Have a great Wednesday.
Warm regards,
Anneliese