Saturday, January 31, 2009

Contacting Austin

There has been a lot of contact made with lawmakers and lobbyists in Austin.  They are in session and now is the time to get things moving on improving newborn screening in our state.  I spoke with Bill, Greyson's dad, about it a little this past week.  It turns out that the funds are just not there to support the cause.  While the support to pass these new requirements is there as far as yay, or neigh.

Money talks.  Money makes the world go round.  Apparently, money is what it is going to take to improve newborn screening, and lots of it.  It looks like the funds will have to come from "big" people with "big" money.  The funds aren't there on the state level.  So..... newborns will continue to be born here in Texas without being screened for 16 additional diseases.  

I met someone since starting the blog.  Her name is Carrie.  Her daughter Hannah is fighting for her life and has been diagnosed with Gaucher's Disease.  They live her in Texas also.  You can read her blog here.  Hannah is having to have extensive therapies, transfusions of different sorts, and tons of other things.  Her family doesn't qualify for assistance with the medical expenses.  Like most of us, they are not wealthy.  They are your average Americans who have worked hard all their lives.  A particular treatment Hannah will begin in a week or so, costs approx.  $30,000/yr. for infants and up to $250,000.00/yr. as an adult.  Where is the fairness in all of this?  Also, insurance has lifetime maximums.  Hannah will be meeting her maximum quickly.  What happens then?   

I don't get it.  I don't understand how price tags can be put on lives!  I think the biggest thing that amazes me... I have gone my entire life unaware of this nonsense.  My naivety was an understatement.  Becoming aware of all this craziness is so very scary.  My ideas of the world are ever so gradually changing as I see what is happening.  

2 comments:

Beth said...

I don't understand either! It seems so unfair...Keep up the good work...I hope this country wakes up to these issues!

Connor's Mom said...

This is one of the reasons why my husband will never, ever be able to leave the military. Our son is literally a million dollar baby at this point, and thanks to our army insurance, we haven't had to pay a dime. I have a hard time fathoming how we would survive on civilian insurance with a child who has 25 pre-existing conditions. The system is broken, and if we weren't military, we would be bankrupt.

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