Wednesday, May 6 (Dystonia Advocacy Day) was quite a busy day for me–and a multitude of others who suffer from dystonia. It really began the day before that (Cinco de Mayo), when dystonia advocates from around the U.S. congregated at our hotel for a review of the issues to be discussed with our Congressional representatives on behalf of the Dystonia Advocacy Coalition.
In essence, those issues included the following:
1. Providing a 7% increase in funding for the National Institutes of Health (NIH), a major dystonia research center;
2. Adding dystonia to the list of conditions on which the Department of Defense can do medical research (a no-cost proposal), since so many military personnel are suffering brain trauma in combat–brain trauma that can lead to dystonia;
3. Supporting legislation that will assure the safety and efficacy of any “follow-on” (essentially, generic) biologic drugs used to treat dystonia, like botulinum toxin–because biologic pharmaceuticals (that is, drugs made from living organisms) cannot be replicated as precisely as non-biologic drugs, leading to the potential for serious side effects and drug failure, if they don’t get it right;
4. Providing for a long-term solution to the problem of the downward adjustment of Medicare payments to doctors. Right now, short-term solutions have provided temporary fixes. But if doctors keep coming up short in being reimbursed, they’ll be driven out of business. Particularly, in a specialized field like movement disorders, in which the drugs used to treat the condition are so expensive. And without qualified doctors, people with dystonia will go misdiagnosed and improperly treated.
So . . . those were the issues. And several groups of us took to Capitol Hill the next day, with our maps and talking points in hand. But, frankly, we were pretty familiar with the issues by the time we met the Congressional aides. And we focused a lot on telling the stories of our own struggles with dystonia. So we could discuss the issues, not as paid lobbyists or lawyers, but as people directly affected (every day) by what Congress does on this. I think that made an impression on most of the Congressional aides we met.
And we got to see a whole lot of Congressional office building cafeterias–where we stopped for lunch, coffee or just to take a load off between visits. It got to where I started calling it the Congressional cafeteria tour. 
Was it worth it? I sure hope so. It was a long day–by the end, I was tired, but a good kind of tired, you know? And I thought my group made an awesome team. We had our presentation down pat, right from the get-go it seemed.
So now it’ll be interesting to see what happens next. Guess I’ll have to keep tabs on these issues. See who votes for what and how it comes out in the final analysis. Let’s hope we made a difference. I’d like to think so.
The Story of Stuff
May 13, 2009 · 2 Comments
Ever wonder what effect the creation, distribution, sales, use and disposal of all your stuff has on the world? I suggest watching this informative (and sobering) video called The Story of Stuff. It’s a lesson in how consumerist culture has created a vicious cycle of destruction and waste. A lesson for us all.
And if you want to see more videos that promote sustainable living and responsible choices, check out Free Range Studios. And feel free to spread the word.
Categories: Commentary · Consumerism · Environment · Lifestyle · Video