Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective News Report of Saint Louis Children's Hospital Press Conference

Monday, December 1, 2008

If You Care...

Many of the families who have survivors of CDH may be denied by their insurance companies a RSV shots which as this sample letter states is a preventative measure to keep not just CDH babies but many children who started in a NICU or have survived through some form of critical care.

Please feel free to use this text for your own letters. All States regulate our Insurance Industry - send this letter to your State Representative and perhaps they will take this under advisement!

Thank you!

Your Name/Address


Your State Representative’s Name and Address

(This should be available on your State Website)

Dear Honorable (Insert Name):

States regulate the Insurance Companies who insure constituents in our area. This regulation protects the consumers and insured. I/we are writing you because there is a injectable shot for Synagis (RSV) which is recommended for infants born prematurely, with heart and lung issues. Synagis is a common virus and it most of us a simple common cold but for these infants and children it can send them back to the hospital and could be deadly. It is also recommended by the American Academy of Pediatrics for children with chronic lung disease up to age two.

These shots are given monthly at a cost of up to or more than $10,000 for the season from late October through April. Just like the flu shot, these are not guaranteed to protect the child from RSV but lessen the duration. Many families have their insurance companies deny coverage for these shots and must appeal after obtaining letters and recommendations from their children’s doctors and specialists. Parents are not subjecting their young children to monthly shots because they want to, but because they feel it is necessary in order to protect them from further setbacks in their development and possible death.

A hospitalization of a child with RSV can run into the tens of thousands and could very well cause further respiratory and developmental issues that would cost more to said insurance companies.

We would like for our state to pass some form of regulation on the Insurance Industry here in (State Name) which would either meet or exceed the American Academy Pediatrics Recommendation for such immunizations on these children.

(Our son/daughter – or any relationship – or your experience here about children that need this preventative care.)

Thank you for your time and attention to this matter. I would be more than happy to discuss further this very important matter.

With kind regards,
Your Name

No comments: