Healthcare Reform: For Her, a Long-Awaited Lifeline

After struggling for years, a sickle cell anemia sufferer may finally get coverage

When you are born with an illness like sickle cell, you look at life a little bit more seriously than somebody who is “normal.” The average life expectancy for women with sickle cell when I started my business was 40. So I said, you know what? That’s like 15 years away. Why waste time?

I knew I was taking a risk. I went quite a few years without pneumonia until earlier this year, when I had it twice. As for the pain, I have medication but I try not to take it that much because it is so expensive. You hoard your pills for when you are really, really in pain--like when you can't move your arm or your legs or you can't walk or sit up.

Depending on the year, I could spend between $8,000 and $10,000 on medical care. Medication is one of the costs. The other is my doctor. She won’t set up a payment plan. You have to pay right there before she will even talk to you. I haven’t been to the eye doctor in years, which is horrible for somebody with sickle cell; but it is expensive.

If I have a really bad episode, I am going straight to the hospital. You pay $250 just to walk into the emergency room. I can have a really bad episode and not even be admitted to the hospital and have a bill darn near $2,000 by the time I get home.


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