Activism, a tenet of good health

We all know that exercise, diet and getting enough sleep are the cornerstone of good health. And now I add another: Activism.
In the fall, thanks to a bipartisan effort, Congress passed the 21st Century Cures Act which freed up more than $5 billion for cutting-edge cancer research.
I knew that research didn’t necessarily mean something directed at my situation. I’d made peace with the fact that I’d have to put energy into activism. At the time, I thought it meant doing battle with the FDA, research hospitals and drug manufacturers to get into promising clinical trials for other cancers, but weren’t looking at mine. I’ve been following the stories of others who are in the same boat, studying how they’ve won their battles. I was ready to spend money going to oncology conferences and research seminars across the country to meet the folks who could open doors for me.
Silly me, thinking all my energy would be going into a plan to heal me, that might mean a cure or at the very least, a manageable, chronic illness. What a difference six months can make.
For the past two months I feel like I’ve been running to stay in place, making calls to my legislators, writing letters, attending town hall meetings, pleading with friends to help me make my case to keep my health insurance just where it is.
See, I’m in the sights of the GOP right now, between my disease – a condition of bad, genetic luck – and my age. I’m precisely the target the plan will hit hardest if it’s passed. The person who will see her rates go up 1000%, definitely outpacing my income.
I certainly didn’t ask for this disease, let alone it’s cost. So far, I’ve done my best to bear it squarely and bravely. And I’m not here to whine.
But I am definitely standing up to say that it’s unfair to burden those of us who are struggling just to survive with massive debt. The pressure alone is enough to take our life. And I should know. I’ve lost a family member to just such a situation.
I paid into the system when I was young and healthy and didn’t use it. My premiums offset the cost of people like me who went before me. And now the GOP wants to cut me off and call it freedom of choice.
Just when I was beginning to have hope for the future, I’m now saddled with the concern that should there ever be a cure, will I be able to afford it?

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