April 2025:Advisory Committee on Heritable Disorders in Newborns and Children
Background:
The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) was established in 2003 by Health and Human Services (HHS) to advise the Secretary of Health and Human Services on newborn screening conditions, tests, technologies, policies, guidelines, and standards. The ACHDNC also reviewed evidence and made recommendations to the Secretary about which conditions should be included on a uniform screening panel that all states are encouraged to adopt.
The ACHDNC was suddenly terminated, effective immediately on Thursday, April 3rd.
Before this committee was established, many infants suffered or died due to inconsistent screening practices across states. The committee brought national coordination and expertise to the process, and its work has made the U.S. program a model for the world. Its members served voluntarily, united in the mission to protect and improve the lives of newborns.
GMDI Statement: Advisory Committee on Heritable Disorders in Newborns and Children
Genetic Metabolic Dietitians International (GMDI) is a non-profit committed to providing standards of excellence and leadership in nutrition therapy for genetic metabolic disorders through clinical practice, education, advocacy, and research. As metabolic dietitians, we have witnessed first-hand the positive impact newborn screening has had on children and families. GMDI is highly distressed by the sudden termination of the Advisory Committee on Heritable Disorders in Newborns and Children and the direct impact this decision will have on the future of newborn screening in the United States.
GMDI is committed to advocating for our members and the patients and families we serve. We will continue to monitor changes in policy and partner with other organizations and policymakers on both sides of the aisle to advocate for newborn screening. At this time, we encourage everyone who has been impacted in any way by newborn screening to reach out to your elected officials and ensure they know the importance of supporting newborn screening.
What You Can Do:
Contact your federal elected officials! Let them know that you oppose the termination of the committee and ask them to support newborn screening.
If you are unsure who your elected officials are, you can find the information here: Find and contact elected officials | USAGov.
Calling your legislator is the most powerful way to communicate with them. You can call (202) 224-3121 and ask them to connect you with your representative or senator. If you are uncomfortable calling your legislator directly, you can also email them directly from their website to address your concerns. All communication from constituents (you!) is recorded for the legislator to review.
Sample Script for contacting legislators:
Dear [NAME OF OFFICIAL],
My name is [NAME], and I'm a constituent from [LOCATION].
I'm writing/calling to urge you to oppose the recent termination of the Advisory Committee on Heritable Disorders in Newborns and Children. Newborn screening has been designated as one of the most successful public health initiatives in history. Before the establishment of the Advisory Committee on Heritable Disorders in Newborns and Children, babies across the US were dying or developing severely debilitating diseases because of variable state screening programs. The committee was established after careful consideration through an overwhelming bipartisan bill to standardize newborn screening across the United States. In fact, the program serves as the model for essentially all NBS programs around the world. Furthermore, termination of this committee in no way serves to reduce government spending or waste, as the members of the committee serve in a voluntary capacity.
[ADD PERSONAL EXPERIENCE WITH NBS]
I am highly concerned about the direct impact this decision will have on the future of newborn screening in the United States. I strongly recommend immediate restoration of the Advisory Committee on Heritable Disorders in Newborns and Children.
Thank you for your time and consideration.
[YOUR NAME]
Do’s and Don’ts for Contacting Legislators:
DO be sure to mention that you are a constituent of the Representative or Senator. They highly value the input of those they represent and will track how their constituents want them to vote or act on specific issues.
DON’T contact legislators of whom you are not a constituent. This can burden the system and distract from actual constituents contacting them on the issue.
DO be courteous and respectful in all communications, even if you disagree with their policy or stance on certain issues.
DON’T be nervous to call them. They are paid to be your voice in the federal government. Most congressional staffers are kind and polite. They will usually thank you for taking the time to reach out and wish you a good day.
Other Tips:
- Stories are the most powerful tool to capture the attention of the legislators. Stories can make an emotional connection with the policymaker and are more likely to make a lasting impression than facts and statistics alone.
- Be brief. Policymakers and their staff do not have time to read multiple page emails or listen to prolonged phone calls. Try to keep you communication to just under 3-5 minutes via phone call or 1 page. Consider making no more than 3 concise points in your communication.
- Always be sure to “make an ask.” In this case we are asking for immediate reinstatement of the Advisory board as mentioned in the sample script.
Other Resources to Prepare for Talking to Legislators: