Legislative Support
Do you want to fight for ALD newborn screening in your state?
Please reach out to us if your state is not testing for ALD. Email [email protected] or [email protected]. While only 44 states + D.C. are testing at this time, we have started efforts in others. We would love to collaborate with you! Your impact as a constituent impacted by ALD is important to this process.
You can also look up your local representatives, as their support can be helpful:
www.usa.gov/elected-officials
Click here for updates on our federal initiative for implementing newborn screening for all Recommended Uniform Screening Panel (RUSP) conditions in every state..
The 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.
Quick facts:
Please reach out to us if your state is not testing for ALD. Email [email protected] or [email protected]. While only 44 states + D.C. are testing at this time, we have started efforts in others. We would love to collaborate with you! Your impact as a constituent impacted by ALD is important to this process.
You can also look up your local representatives, as their support can be helpful:
www.usa.gov/elected-officials
Click here for updates on our federal initiative for implementing newborn screening for all Recommended Uniform Screening Panel (RUSP) conditions in every state..
The 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.
Quick facts:
- The ALD newborn screening test is proven to be accurate with a false positive expected to be <.1%
- 1/15,000 children will be diagnosed with ALD
- An estimated 235 babies will be born every year in the United States with ALD
- 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, boys will be monitored with MRIs. If any cerebral changes are detected, life-saving treatment is available (transplant or gene therapy).
- Studies have concluded transplant prior to being symptomatic is the key to having a successful outcome,
- 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.
Back to: What is ALD?
