All babies born in CT hospitals are screened for 52 selected genetic and metabolic disorders, usually within the first 48 hours of life. Now ALD is included in that list. The CT Department of Health implemented newborn screening for ALD in October 2015. In January, our first CT baby with ALD was identified. Because ALD is genetic and passed to boys from their mothers, this infant’s 2-year-old brother was tested a few weeks later. He too tested positive for ALD. There is a silver lining here. With early detection, treatment can be promptly initiated to prevent complications and irreversible problems. The children will be monitored and cared for according to an established protocol. These words are from parents Autumn and Sam Ford, “It’s news we didn’t want to hear. A reality we didn’t want…but since it is our reality, we are thankful we got the news. Our boys have ALD. This is our life now. And we have a fighting chance because of the screening. We are blessed it was added to the newborn screening.” It was bittersweet to have the diagnoses, but at the same time very rewarding to know the system is working and lives will be saved.
Brian’s Hope has been working towards this for several years. New York and Connecticut are the only states currently testing for ALD. New York has identified over 40 infants since January 2014, which does not include other family members who might be affected. California will begin screening in June. However, this is not good enough. All US babies should be tested.
In an effort to realize that goal, there is currently a federal bill proposed in DC. New York Senator Schumer introduced the bill in March: Senate bill S.2641 and House of Representatives bill H.R.4692. We encourage all of our supporters to reach out to their federal legislators. Here are the links to CT Senators:
Blumenthal – www.blumenthal.senate.gov
Murphy – www.murphy.senate.gov
Your members of the House of Representatives are of utmost importance as well. Ask them to sign on and co-sponsor this bill. Please tell them that there is a reliable screening process, and only with early detection we can treat ALD. It is a life-saving, money saving and bi-partisan bill. Time is of the essence; we need to pass this bill out of the Health Committees to keep the process moving. Sending an email will take less than 2 minutes and you are potentially saving lives. Imagine for a moment: it could be a child you love who is saved.