Are we too passive?
Posted: Thu Mar 20, 2014 6:34 pm
I watched the documentary "How to Survive a Plague" this week. The film follows the group Act UP, which was an LGBT activist group, from the beginning of the Aids epidemic. I couldn't help but draw parallels to the MS struggle as I watched.
They faced the familiar red tape in Washington, the drug companies dragging their feet, etc. At first, none of the therapies were effective, then some were somewhat effective but disappointing. This is where we currently are with MS.
But in the late 90s, they hit the jackpot so to speak by combining certain drugs. The effectiveness rate skyrocketed, and now AIDs is no longer a life threatening disease for many.
But they didn't just get there by accident or by sitting back and waiting for the process to work. They were extremely active. They had scientists and MDs, insiders at the FDA etc. who proposed studies, and basically took the system by the hand and led it along. I don't know how I feel about their tactics of staging protests and taking over offices etc., but they achieved their goals.
It was eye opening to me since I didn't know much about AIDS. But we face the same disappointing cycle of false starts, weak drugs, and red tape. I wonder what would happen if we actually had a real advocate group, as opposed to the mess that is the MS society. What if we were motivated to fight until we were heard and got results? What if the answer is there waiting to be tested?
They faced the familiar red tape in Washington, the drug companies dragging their feet, etc. At first, none of the therapies were effective, then some were somewhat effective but disappointing. This is where we currently are with MS.
But in the late 90s, they hit the jackpot so to speak by combining certain drugs. The effectiveness rate skyrocketed, and now AIDs is no longer a life threatening disease for many.
But they didn't just get there by accident or by sitting back and waiting for the process to work. They were extremely active. They had scientists and MDs, insiders at the FDA etc. who proposed studies, and basically took the system by the hand and led it along. I don't know how I feel about their tactics of staging protests and taking over offices etc., but they achieved their goals.
It was eye opening to me since I didn't know much about AIDS. But we face the same disappointing cycle of false starts, weak drugs, and red tape. I wonder what would happen if we actually had a real advocate group, as opposed to the mess that is the MS society. What if we were motivated to fight until we were heard and got results? What if the answer is there waiting to be tested?