It was the summer of 1998 and I was a junior in college. Coming back from a conference, my mom felt numbness. After visits with the doctor and testing, my mom was diagnosed with Multiple Sclerosis (MS). I had no idea what MS was, what happened to the patient. The only thing I knew was that there was an actress from the Mickey Mouse Club that had MS. Looking back, I think this was a pivotal moment for my family in terms of how we talk about health issues. We yearned for more information, to understand what could happen to mom. I moved about an hour and a half away for my career, and would listen to webcasts at night while I was travelling. On one hand, understanding what could happen is a great; information is power. On the other hand, thinking about all of the things that could happen, is quite scary. But, I wanted to make a difference, so I started volunteering at a nursing home in my area soon after I moved to the DC metro area. That was short-lived. I visited with a 30 something guy who was wheelchair bound and legally blind...in a nursing home at 30 years old! It made me cry. It was still too new for me. We didn't know what course my mom's disease was going to take. I didn't want my mom to end up like that. While it was tough and short-lived, it was a very valuable experience. It showed me the affects that this disease could have and even now, I compare MS to cancer; every patient is different. What's good and bad about the disease is that because it's so individualized, people see folks like Montel Williams (lifting weights!) and Jack Osborne, and think, "How bad can this disease be? Look at him, he looks fine! MS must not be that big of a deal!" But there are others, like Richard Pryor and the thirty-something guy in the nursing home.
I provided all of this background to show why MS is important to me and I advocate for MS. Life kind of got in the way for awhile; I traveled for work for awhile, got married, had a couple of awesome kiddos. But now I'm in a position where I can help again. So when I saw an email about Maryland State Action Day, I was intrigued!
I took a day of leave from work that, outside of playing with the kids or having me-time, was the best way I could have spent a day off. I spent the day talking with representatives in the Maryland state legislature. I was part of a group with two other women, both of whom had MS. Both women are bright and funny, and are managing MS the best way that the can. We talked to a few representatives about a few issues that impact people with MS (and other diseases). However, the one that I happened to take to was about specialty drugs tiering. That's because when mom was getting ready to retire, she had to factor in the cost of her medicine. MS drugs are very expensive, and hers was $1,000 per shot, if I recall. When I've thought about retirement planning, I haven't thought, "How am I going to pay for medicine?" In some areas, the cost of medicine is just as much, if not more than, a mortgage. The specialty drug bill that I talked about would cap a patient's cost to $150/month. Lowering costs to that level means that patients that take specialty drugs would not have to even consider between the basic hierarchy of needs and their medicine. Unfortunately, the bill was withdrawn due to an unfavorable report. To me, that means I get to go back next year and advocate again. Persistence will pay off, in some form or fashion.
Bringing awareness is to the disease is key, as long as with the Motels and Jacks of the world, we also see the two women I advocated with, my mom, my coworker's husband, my friend, and the rest of those impacted by MS. So to do my part, I again used Facebook to raise awareness and fundraise for Walk MS. My friends have been super awesome! I raised $575 and $295 of that was raised four or five day period. That's awesome! In addition to sharing MS updates or fundraising with Facebook, I thought I would do something a little different this year. To help me build my Tableau and data visualization skills, I decided to visualized the data to raise awareness.
We are very fortunate that my mom's experience with MS has been relatively good, all things considered. With awareness, research, and support, we can make more progress towards providing the support patients needs and ending MS. So Join the Movement with me and support MS!
For my data viz friends, another blog post will be forthcoming on this viz! A special shout out to Ramon Martinez, Matt Francis, Kelly Martin, and Anya A'Hearn for their help and feedback on the viz in the post.