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We Have To Change The World

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How do we make the invisible visible? I talk to people with chronic illness every day who are homebound and paying a terrible price for their illness.

• A little kid being referred to truancy court because his school doesn't believe that he really has ulcerative colitis despite the fact that they have his medical records, which include a report of a colonoscopy that just can't lie.

• A woman who's had two strokes at age 30 and is having trouble navigating the Medicaid system, but we can't find anybody in her state to help her.

• A man who loses his insurance, can't afford to replace it, but will become disabled by dystonia if he stops treatment. Clearly, it's better for society if he keeps working, but society won't help him fund his medical care.

This is the world of the chronically ill. And it has to change.

I don't quite know how to change the world, but I'm committed to trying. A hunger strike was a drastic idea, I know, but that gives you an idea of how desperate I feel about getting this word out.

So what can we do? Well, I'm writing more -- both here and I'm working on something longer. I'm telling some more stories. I'm trying to explain how irrational insurance is. If you have a story that I can tell, please send it to me. My email address is patient_advocate@sbcglobal.net.

I will not use your name in public, but I will try to make the horrors you live with mean something by using them to argue for change.

And then there is legislation. Every week now, Congress is voting on defunding of health reform. If you don't know how bad that would be for us chronically ill, then you don't yet fully understand health reform. Starting in 2014, if you earn up to 133 percent of the federal poverty level, you will get Medicaid. There will be an exchange, a marketplace where you can compare and buy insurance. And there will be subsidies for people who don't qualify for Medicaid that will make insurance more affordable. That will mean that people like the man with dystonia I mentioned above will be able to buy insurance. So contact your members of Congress and urge them to stand strong on health reform.

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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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