We made our way up to Albany this past Monday February 4th and had over 40 meetings scheduled with the ALL Health Committee members.
Thank you to Aidan’s Grandpa Bob for helping me split the meetings in half and getting into all of those offices to speak to and drop off our file folders of information.
We had a great day and even though it was more than emotionally and physically draining to repeat Aidan’s story as many times as I did, we have brought Aidan’s Law a little closer to being accomplished. We’ve had more members sign on to the Bill and more who have promised to sponsor and push it forward. I am thankful to all the Senators, Assemblymembers and staff who took the time to listen and pass this information on.
Not sure why this has been such a struggle. We have all the information we need to make a difference, why are they waiting??
Who will tell those parents whose son has been diagnosed with ALD a few years from now, there was a test available??
We keep fighting to make this happen & it will…..
- $375,000 estimated annual cost to add ALD test to NYS Newborn Screening Panel
($1.50/child x 250,000 births per year)
- The ALD newborn screening test is proven to be accurate with a false positive expected to be <.1%
- New York State has the needed equipment to run this test
- Current statistics state 1/17,000 children will be diagnosed with ALD, according to preliminary results from the Mayo Clinic this number may be much higher and closer to 1/10,000
- An estimated 25 children will be born every year in New York State with ALD
- Without the crucial early diagnosis these children will die from ALD or Adrenal Insufficiency
- 90% of boys with ALD will also have Adrenal Insufficiency, which is something that can present itself in the first few months of life and can be easily controlled with a pill that costs pennies a day. Non treatment of adrenal insufficiency can result in death.
- Once diagnosed with ALD these boys will be monitored with an MRI every 6 months, if any changes are detected treatment will consist of a bone marrow transplant
- Studies have concluded transplant prior to being symptomatic is the key to having a successful outcome, stopping the disease and these boys having a normal life
- Cost effectiveness of treating pre-symptomatic boys as opposed to symptomatic boys is astounding. Pre-symptomatic boys going through transplant can be released from the hospital within 3 months with follow up visits, as opposed to symptomatic boys which almost always have significant disease progression and will need constant medical and nursing care