Thursday, October 15, 2009

Health Care System Blocks Andrea's Diagnosis of Angelman Syndrome

What is wrong with a country that is considered to be the wealthiest nation in the world but does not provide medical care to their own citizens? For those of you that feel that you are safe because you have insurance, I must point out that you have a false sense of security! It's no secret that insurance companies can dump you at any time, they can pick and choose what they want to cover, and they can leave you high and dry when you might need them the most.

Last night I watched the show, Mystery Diagnosis. I often watch this show and see first hand what is so wrong with our health care system. However, last night I watched a particular disturbing episode. A mother soon realized after bringing her new born baby home that something was very wrong with her daughter, Andrea. Andrea could not keep any food down and always seemed to be in pain after eating. Doctors chalked it up to colic. This went on for months, and doctors continuously told the mother that she needed to "just deal with it." The last time Andrea saw the doctor, he insinuated that Andrea was suffering from neglect and that the mother needed to step up to the plate and take care of her daughter. Andrea's mother was in shock that nobody took her cries for help seriously and even placed blame on her. After finally having enough, Andrea's mother called the doctor's office and demanded that she see the chief of pediatrics. She got an immediate appointment with one of the top specialist, and he could see in an instant that there was something very wrong with Andrea as her head had not grown, she wasn't reaching developmental mile stones, she could not keep food down therefore becoming very malnourished and very underweight for her age, and she had an unusual disposition for her age coupled with very jerky movements. He referred her to a pediatric developmentalist, but quickly found out that her insurance would not cover this and was told that there was absolutely no further help that could be given. Andrea's mother was left at a dead end with a child that so desperately needed medical attention!

The insurance company made a very conscience decision that Andrea didn't need a diagnosis. They make these decisions every day in our lives! What is wrong with a system that allows an infant to suffer? What is wrong with a system that first looks at the dollar signs before even looking at a very obviously sick little girl? With out this mother's persistence, Andrea would have for sure died! In the end, Andrea's mother took her to the Albany Medical Center ER which was two hours away from their home. There, Andrea finally received the medical attention that she deserved and finally received the appropriate diagnoses of Angelman Syndrome. It is a chromosomal disease that was easily diagnosed with a blood test!

This family came very close to loosing a child. This did not happen to a family that didn't have insurance, BUT it happened to a family that did have insurance. Who is really looking out for us? We, as a people, need to advocate for our health and for our future. The insurance companies are so obviously not in the business of doing this for us. This very issue's future is currently in the hands of our government. Will we finally have the health care in this country that is very much over due, or are we going to receive more of the same? Are we going to continue to allow the health care industry to buy congressional votes with the money they profit on from our premiums? This should not be a political issue that divides us! This is an issue that should unite us! There is a blatant crime going on, and innocent lives are being lost every day!

Below is a link to the show that I watched last night, although not a very good quality picture.

& below is the last half of the show


  1. Wow! This is Andrea's mommy! I agree with you 100% about the insurance ordeal. I really wish when we had filmed this episode that they allowed me to state what I really wanted to- they said "Try not to show bitterness". But basically, the Dr. wanted her to see the developmentalist. I get the phone call from his secretary, who says "Dr. Malone will not accept her insurance." I said "So, what do we do now?" "You can look for your own developmentalist." "I don't even know what a pediatric developmentalist is!!" "Sorry, there's nothing the Dr. can do for you anymore, we don't have time to find one that takes your insurance." (Tears from me) "So, I'm supposed to just let my daughter suffer, over INSURANCE issues?" "I'm sorry, Ms. Huestis."

    Talk about frustration! My story had so many twists and turns, much was left out unfortunately. I agree, THE SYSTEM NEEDS TO CHANGE. It would of been easier to make an out of network agreement with Dr. Malone than to bring her into the E.R.! But it all worked out, Albany Med is a great hospital. I wish I lived closer, my children would ALL go there!

    Thanks for watching!
    Heather AKA Verucalise,

  2. I am so glad to hear from you! I hope Andrea is doing well now with the appropriate care! I can only hope, with the passage of the new health care bill, that changes to our system will finally change for the better. I know it is far from perfect, but I feel that it is a step in the right direction!