Well I finally did it. I was able to share my story with all of the elected officials. You can do it too. Just double click the title of this blog and it will take you to the website I used. This is what I sent to all the Missouri Senate, House Reps, Governor and even the President of the United States. It was pretty easy I typed it in word and saved it. The Arthritis Foundation had all their contact info and most of them had web forms. So I just copied and pasted the info in. I hope I can encourage others to do the same. It really only took 30 minutes to send this to all my officials.
I have a daughter born with Juvenile Arthritis I am writing you today to try and encourage you to support the Arthritis Foundations proposed bill. We are asking that the FDA keep track of what these powerful medications are doing to children by starting a registry. The medications have been a blessing. My daughter started walking at 9 months and quit at 14 months by the age of 2 you could no longer notice anything wrong with her. These kids and their parents have to make a choice of treating a condition that is very painful and affects quality of life, with strong medications that by side effects and warning could be very detrimental to their health. It would be nice to have all the facts out so we can make a better well informed decision. I don't know if Breanna will get pediatric cancer or if her lungs kidneys and liver can tolerate it if her condition persists. I do know that without the Methotrexate she would be in agony everyday all day. I can remember when it first flared I had given all the Tylenol and Motrin a little one could handle and at 3 am we were in a warm bath and both of us were crying. I could not take her pain from her. That is a parents worse nightmare, your child in pain and you can not make it better.
We would also like to increase research money. Arthritis affects 64 million adults and about 300,000 children right here in the US. It is also the #1 leading causes of people having to quit work and go on disability.
And the last thing we are asking is that Insurance companies quit discriminating against people with pre-existing conditions. I can not believe this has gone on. Discriminating against sick people should have never been allowed. If you with hold knowledge of a health condition and kept that information from the company it is fraud. But if you are honest about a health condition it should not affect your ability to get coverage or change the price or coverage you are offered.
My daughter started having problems 2 months after I started work with the State School. It took months to get a diagnosis. Our doctors here after 2 X-rays sent us to Children's Mercy They knew right away what it was and started treatment immediately. We started methotrexate, Naproxen and the expensive steroid injections. I was staring at $10,000 worth of medical bills. I worked for months as the middle man between the clinic and the Insurance Company. I was so stressed the doctors at children’s mercy noticed and referred me to a caseworker. It seems First Health was investigating a pre-existing condition. The caseworker who deals with these companies for a living was even having trouble sorting things out. They did eventually pay. They refused to cover her physical therapy and they kept fighting her eye appointments. I don't have vision coverage. It shouldn't matter she is high risk for uveitis because of her medical condition they cover it for people with diabetes. Why do we continue to let this form of discrimination happen? Help us by supporting The Arthritis Foundations Bill.
Again I would like to encourage you to share your story and how Health care Reform can affect your family.
http://capwiz.com/arthritis/home/ This is the website I used.
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