Take the first steps by going to: http://openstates.org.
Find your local Representative and Senator, contact them to set up a meeting to have a Bill introduced in support of ALD Newborn Screening. It will be important to bring documentation of why implementation of ALD Newborn Screening is so important to saving lives.
Cost of adding ALD to a state’s newborn screening panel is minimal in comparison to the cost of caring for the boys that have been diagnosed too late and will need 24 hour care.
Cost Factors will depend on a variety of different factors including:
- Does your state have the equipment that is necessary?
- If not, are they willing to outsource testing to another state? (Most cost effective method for smaller states)
- Go to: Babysfirsttest.org to contact your state’s newborn screening center and find answers.
Over 80% of the current diseases tested for RUSP (Recommended Newborn Screening Panel) are rarer than ALD and some have no treatment options. With ALD it is crucial for an early diagnosis and treatment options are in place.
- The ALD newborn screening test is proven to be accurate with a false positive expected to be <.1%
- 1/17,000 children will be diagnosed with ALD
- An estimated 235 babies will be born every year in the United States with ALD
To find the number of babies born in your state: http://www.cdc.gov/nchs/fastats/map_page.htm
- 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 or gene therapy
- 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.
For letters of medical support and other documentation that will be helpful, please e-mail: info@AidanJackSeegerFoundation.org