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The past month has been tough for me. Actually, several months. We lost an insurance appeal that really was about life and death, and the reasoning was so perverse and so wrong that it was devastating and made me wonder why I'm working this hard when the people who make decisions (or at least some of them) sometimes don't even read what we send them, and often just don't care. At all. The patient in that case is a lovely young woman who deserves the chance to have a decent life, and a couple of bureaucrats who seem pretty heartless are in the way. And they win, because they can. It's just so wrong.
Add to that the increasing number of calls and emails we're getting from people who've lost jobs and houses and insurance and are desperately ill. And due to budget cuts on both the state and federal levels, there are fewer resources for people in need. Again, it's just so wrong.
And then the World Health Organization released a report stating that chronic illness is now the leading cause of death both in the U.S. and the world. This important information was published in the LA Times, and then two days later, in the Washington Post, but it was never even carried in the rest of the mainstream media. We are suffering -- and we are invisible.
The 13-year-old boy whose school referred him to truancy court rather than providing him with accommodations for his ulcerative colitis. The 30-year-old woman who's had two strokes and is having trouble navigating the Medicaid system, but we can't find anybody in her state to help her. The man with dystonia who lost his health insurance and will become totally disabled -- at taxpayers' expense -- if he can't get care.
This is the world of the chronically ill. It has to change.
My desperation to do something -- anything -- to find help for people who are broke and sick has led me to drastic thinking.