I was invited to attend the National MS Society’s Public Policy Conference in Washington, D.C. at the beginning of March. We kicked it off on Monday afternoon. There were about 200 people there, many decked out in orange apparel- people living with MS, people whose loved ones have MS, MS medical personal and MS Society staff.
John King from CNN was our Keynote speaker Monday afternoon. He shared his MS story. He was diagnosed with MS in 2008 and shared the news publicly on his TV show in 2021. He answered questions about his MS journey and about his work covering politics.
Our First Priority- Support $22 million for the MS Research Program and $7.5 million for the VA MS Centers of Excellence in FY24
Next, we learned about our first priority- Asking Congress to Increase Funding for the MS Research Program (MSRP) and the VA MS Centers of Excellence. The MSRP is the only federal research funding stream specifically for MS. It is funded through the Department of Defense. The MSRP funds High Risk, High Reward studies that wouldn’t normally be funded by the National Institute of Health. For example, the study that found that Epstein Bar Virus triggers MS was funded by the MSRP.
The VA MS Centers of Excellence were established to help Veterans living with MS. There are 70,000 veterans living with Multiple Sclerosis and 50,000 of them get their care though the VA MS Centers of Excellence. New research shows that there is an increased association between deployment during military service and an increased risk of developing MS, but we don’t know WHY- Is it stress related? Is it service location related? Is it because military personal have access to healthcare and so it is diagnosed more often?
Funding for the VA Centers of Excellence was funded at $4.5 million in Fiscal Year 2023, but we are asking if Congress will support asking the DOD to increase their budget to $7.5 million in Fiscal Year 2024. We need Congress to increase funding for both of these very important programs, that are helping to move us closer to a cure! We especially owe it to our Veterans to get them the excellent care they deserve. (Statistics provided by the National MS Society. You can read it more about it here: https://tinyurl.com/6vbcxf4n )
Our Second Priority- Congress Must Address Barriers to Air Travel Accessibility
Have you been on an airplane? It’s not just wheelchair users that have issues getting on and off a plane. I use a walker and its nerve-wracking to fold it up to hand off to an airline worker with a line of impatient passengers waiting to get to their seats. I also have bladder and balance issues, both gifts to me from my MS. For myself, if my flight is longer than an hour and a half, I won’t drink anything on the plane so that I (hopefully) won’t have to use the bathroom. It’s hard to climb over people to get to the tiny aisle and then struggle down that to make it to the bathroom. On my flight home from DC, there was a Momma with a baby who needed to change the baby’s diaper. I was trying to figure out where she would do that in the lavatory- in the sink? Lay the baby on top of the closed toilet seat? She apparently got it done but I had many questions on how. Airline bathrooms are not accessible to anyone in my opinion.
Safe airline travel is an Equal Rights issue. The ADA was written to make places accessible for people with disabilities. Every other mode of transportation has become accessible- buses, subways, trains, and cars. Even Universal Studios Hollywood has an accessible way to move you around different levels of the park via private bus transfer! However, airlines have never made planes accessible. Instead, they want to fit as many seats on a plane as possible because people in seats are what gives them their record profits. If you are disabled and cannot walk, they literally strap you into a seat and you can’t move from that seat until it’s time to unstrap you once you’ve landed.
Many people with MS use a walking aid and many people with MS consider their walking aids as a vital part of their identity. Airlines are notorious for damaging customized wheelchairs. (You can read the story of Engracia Figueroa, a disabled activist who died after United Airlines damaged her wheelchair here: https://tinyurl.com/6bxwfp2s ) Customized wheelchairs are specifically made for the person who uses it. They cost thousands of dollars. If they get damaged when they are thrown under the plane, it’s not like a spare customized wheelchair was packed for the trip. It’s unfair and ableist to think a person can and should just use a standard wheelchair.
The current law says that it is against the law to deny people with disabilities the right to airline travel but there are no laws that require basic accessibility. Airlines don’t have to replace your mobility device. If they choose to, they have no set time limit in which they need to replace it for you. Very often they use a third party that they choose to get a replacement estimate and often they don’t provide enough compensation if you need to have it replaced.
How can Congress solve these airline issues? They can pass the Air Carrier Access Amendments Act (Baldwin/Titus) (H.R. 1267/S.545) this would mean as new planes are built, they could be designed to accommodate people with disabilities. You can find more information here from the National MS Society: https://tinyurl.com/yckkt3wx ) If you have an airline story, I encourage you to write a letter to your Congressperson and let them know why this is an issue for you or your family. Airline Accessibility affects ALL OF US.
Wednesday was HILL DAY! I was given four offices that I needed to set up meetings with before we got to D.C. As this was the first time I had ever attempted to set up Congress office appointments, I didn’t realize that everything in D.C. moves very fast and scheduling meetings were finalized much closer to our arrival date. I was so excited, I could barely little sleep the night before.
My team had meetings set with one Senator’s office and the other meetings were with our House Representatives offices. In our training the day before, it was mentioned that we might have meetings in the hallways and that doesn’t me anything other than the offices have limited meeting space. I was really glad this was pointed out because I would have taken it as a bad sign to be in a hallway but most of our meetings were in fact, held in the hallways. We shared our stories on how the passage of both of these priorities affected us and asked for their offices support on them.
Storytelling comes naturally to me. I have always been open about living with MS and how it affects me and my family. Where I struggle is how to get my story out to the ears that need to hear it- Congress, medical staff, newly diagnosed people. If you want to share your stories and take action too, you can use this link to sign up to be an MS Activist with the National MS Society: https://tinyurl.com/4d7x95vh
The more voices we have the better.