Say this to your US Rep about Patients' Bill of Rights

October 6, 1999

I just returned from the annual meeting of the National Organization for

Rare Disorders. Here is what they recommend we say when we phone our reps

in the U.S. House of Representatives about the Patient's Bill of Rights

being debated today in the House.

You can see this now live on Cspan.

Go to www.house.gov to find out the name and number of your rep.

A legislative aid will probably take your message. Just say you are a

constituent and that you want the Norwood-Dingell Act to pass. That is

enough. Go ahead and say more if you want.

The Norwood-Dingell Act has been carefully put together to address many of

the issues most of us have with insurance companies and managed care

reform. It tries to a solve the current problem of insurance companies

deciding which doctors we can visit, and which treatments we can have. It

puts the decision making back into the hands of the patient and the doctor.

More to the point, it gives patients the right to sue the insurance

company if the DO make medical decisions and cause damage. It has more to

it than that. You can read it on the internet at the website mentioned

above. It is HR 2723.

Note a more watered down version is being proposed by some republicans.

The dems like Norwood-Dingell and there are also at least 12 republican

co-sponsors. So far the republicans have tried today to block the passage

of the bill by attaching what sounds like a great additional bill. The

attachment relates to giving access to insurance to those who cannot get

it. Don't be fooled. The result of their efforts can lead to what we have

gotten in the past. Nothing. If both sides of the house don't decide,

then nothing will pass. How many months more do we want to wait to make

medical decisions of our own?

Note, I am neither republican or democrat, but more middle of the bird (as

Pat sen used to say). In this case passage of Norwood-Dingell just

makes sense and I hope many of you call your US Rep today or tomorrow.

NORD's leadership endorses this approach. See www.rarediseases.org. We

have much in common with people with other health issues. We all want to

act sometimes. This is one of those times. Go to the phone.

Steve

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