Letter of Support for HB 77
Please use the following template in emailing your Alabama State Representative and State Senator to support HB 77, The Zachary Thomas Newborn Screening Act.
Subject Line: Constituent requests your support on HB 77 Newborn Screening Bill
Dear {Representative or Senator with name},
My name is {insert name} and I am a constituent living in {insert town or city}. I am emailing to ask you to support HB 77, The Zachary Thomas Newborn Screening Act, sponsored Rep. Phillip Rigsby (R-25) and its Senate counterpart led by Sen. Dan Roberts (R-6).
Newborn Screening is a public health service for all babies born in the United States. Screening typically occurs within the first 48 hours of life to identify potential diseases that would affect the overall growth and development of the child. Standard testing includes a blood spot analysis, hearing screening, and a heart screen.
The federal government tasks the Advisory Committee on Heritable Disorders in Newborn and Children and the Secretary of Health & Human Services with determining which diseases qualify for the Recommended Uniform Screening Panel (RUSP). Then individual states carry out their own Newborn Screening policies and procedures at their own discretion.
The Recommended Uniform Screening Panel (RUSP) now has 37 primary conditions, with reporting of 26 secondary conditions. Currently, Alabama tests for 33 primary conditions and 26 secondary conditions on its Newborn Screening Panel. It is missing four diseases recommended by the federal RUSP. The diseases are MPS I, Pompe, MPS II, and GAMT, all rare diseases with approved, lifesaving treatments.
The FDA predicts there will be 10-20 new cell and gene therapies approved by 2025, with a prediction of 10-13 new conditions approved to the RUSP in the next 10 years. Alabama simply cannot afford to fall further behind in this area.
The Zachary Thomas Newborn Screening Bill, HB 77, will effectively:
· Bring Alabama into RUSP parity
· Include a timeline for implementation & reporting structure if there is a delay in adding diseases
· Outline funding sources for the increased screening measures
Your support of The Zachary Thomas Newborn Screening Act, HB 77, could lead to life-changing early diagnostics for Alabama’s 55,000 babies born each year. For more information, please visit www.alabamarare.org/newborn-screening or contact Rep. Philip Rigsby. The Bill will be heard in the House Health Committee on Wednesday, February 21, 2024.
Sincerely,
{Your Name}
You may find your Alabama legislators by searching the following:
Alabama Rare & Alabama Department of Health
Announcement Bill HB 77
February 5, 2024
Alabama Rare and Alabama Department of Health (ADPH) are pleased to announce that proposed legislation known as the Zachary Thomas Newborn Screening Act will be introduced in the 2024 regular session of the Alabama Legislature as house bill 77. Rep. Phillip Rigsby (R—Huntsville) is sponsoring the legislation. The bill is named in recognition of Zachary Thomas, a 14-year-old Foley rare disease advocate born with MPS I, who is living with long-term effects of the disease because a lack of newborn screening delayed his diagnosis and access to life-saving treatment until he was one year old.
The legislation was developed as part of a multi-year partnership between Alabama Rare and the Department of Health’s Newborn Screening Program. Alabama Rare is committed to the state's newborn screening program as early diagnostics through newborn screening saves lives, improves health outcomes, and reduces long-term healthcare costs by allowing for early detection and intervention. Without newborn screening, many rare disease patients on average incur at minimum $220,000 in avoidable diagnostic medical costs and lost income and wait for about 6.3 years to receive a diagnosis, according to the EveryLife Foundation's "The Cost of Delayed Diagnosis in Rare Disease: A Health Economic Study".
Wes Stubblefield, MD, ADPH Medical Officer, states, “The Alabama Department of Public Health's Bureau of Clinical Laboratories is pleased to work alongside the rare disease community, strengthening our robust newborn screening program. The proposed legislation is crucial to our efforts that will further improve the health of Alabama's children and our families.”
Rep. Phillip Rigsby (R—Huntsville) states, "I am honored to sponsor the HB 77, the Zachary Thomas Newborn Screening Act during the 2024 Legislative Session. This legislation will provide expanded screening for more rare diseases and help provide early recognition and treatment for families whose little ones are affected. This has been a great collaboration between the Alabama Department of Public Health and Alabama Rare to foster a better testing environment for those affected by rare genetic diseases. I look forward to working to get this bill passed and signed into law.”
For the estimated 1 in 10 Alabamians who have a rare disease, the term “diagnostic odyssey” is a daily reality. Half of those living with rare diseases in America are children and 1 in 3 of them will not live to see their fifth birthday. Bolstering state newborn screening programs is a concrete step lawmakers can take to help individuals with rare diseases and their loved ones live healthier and longer lives.
What is Newborn Screening?
Newborn Screening is a public health service for all babies born in the United States. Screening typically occurs within the first 48 hours of life to identify potential diseases that would affect the overall growth and development of the child. Standard testing includes a blood spot analysis, hearing screening, and a heart screen.
The federal government tasks the Advisory Committee on Heritable Disorders in Newborn and Children and the Secretary of Health & Human Services with determining which diseases qualify for the Recommended Uniform Screening Panel (RUSP). It is then largely up to individual states to carry out their own Newborn Screening policies and procedures.
The Recommended Uniform Screening Panel (RUSP) now has 37 primary conditions, with reporting of 26 secondary conditions. Currently, Alabama tests for 33 primary conditions and 26 secondary conditions on its Newborn Screening Panel. It is missing four diseases recommended by the federal RUSP. The diseases are MPS I, Pompe, MPS II, and GAMT, all rare diseases with treatments.
FDA predicts there will be 10-20 new cell and gene therapies approved by 2025, with a prediction of 10-13 new conditions approved to the RUSP in the next 10 years.
This will allow for many new diseases to be added to the state panel in the near future.
Learn More: Newborn Screening Awareness Video
Why is Newborn Screening Important?
Many of the diseases tested for during Newborn Screening are caused by a change in DNA known as a genetic mutation. While most genetic disorders are inherited, many babies diagnosed through Newborn Screening have no known family history of the disorder.
Screening at birth helps identify serious diseases before many of the detrimental effects of the condition begin. In turn, this offers a substantially improved quality of life for those living with a disease.
Newborn Screening does not officially confirm or rule out a certain disease or disorder. Instead, it allows for further follow-up care from a family's Pediatrician or a Geneticist. It is estimated that around 200 diagnoses are made annually in the state through Newborn Screening.
Watch Alabama parents share their personal stories on how newborn screening or lack of it has impacted their child’s life.
Featured Speakers:
Brooke Thomas - Mother of 3 children, Zachary, Amelia, and Luke, living with MPS-I; Time Stamp: Start - 16:35 min.
Darlene Hollanquest - Adult living with Sickle Cell Disease; Time Stamp: 16:37 - 26:23 min.
June Wilson - Mother to Lorde Wilson, living with deaf/hard of hearing; Time Stamp: 26:25 - 45:45 min.
Linda Russo - Mother to Francis, living with SMA; Time Stamp: 45:46 - 56:42 min.
Jenna and Seyth Snell - Parents to Henry Snell, living with Congenital Hypothyroidism; Time Stamp: 56:45 min. - End
Alabama Newborn Screening Conference - September 22, 2023
Newborn Screening Parent Panel
Newborn Screening Legislative Breakfast - March 23, 2023
Newborn Screening Resources
Alabama Department of Public Health (ADPH)
ADPH is the agency, alongside local hospitals, responsible for carrying out the state’s Newborn Screening Program. The Alabama Newborn Screening Program through state laws and regulations makes sure newborn screening is followed and protocol is in place. The program allows for early identification of and follow-up for infants who are positive for conditions on the newborn screening panel. The program works together with pediatric specialists and hospitals who perform the heel stick and send the blood spot to the Alabama Bureau of Clinical Laboratories (BCL) for analysis of the newborn screening panel. BCL is run by ADPH and is the only provider for blood analysis of newborn screening in Alabama. As of November 2023, Alabama has 44 birthing hospitals and 475 home births. The BCL screens ~60,000 babies each year, and approximately 150,000 specimens are sent to the lab each year for testing, with ~200 positive diagnoses. The BCL also provides filter paper for screening to medical providers.
Alabama Newborn Screening Program has an Advisory Committee made up of medical and advocacy experts across the state.
Learn More at https://www.alabamapublichealth.gov/newbornscreening/index.html
Follow ADPH on Facebook at Alabama Public Health, Instagram @alabamapublichealth, and Twitter @ALPublicHealth
EveryLife Foundation
EveryLife Foundation is a leading national rare disease advocacy organization that is committed to improving diagnostics and access to treatment for families affected by rare diseases through public policy. One program the foundation has is Newborn Screening. Through its program, the foundation aims to educate as well as improve policy toward newborn screening at both the federal and state levels. The foundation has helped pass newborn screening RUSP alignment state legislation in 11 states to help improve state programs and their labs. Visit their website and newborn screening action center to learn more about the newborn screening program at the national and state levels.
Learn More at https://everylifefoundation.org/newborn-screening/
Follow EveryLife Foundation on Facebook at EveryLife Foundation, Instagram @everylifeorg, and Twitter @EveryLifeOrg.
Baby’s First Test
Baby’s First Test, a program of Expecting Health, is the country’s educational hub that brings together a comprehensive set of resources on newborn screening and the conditions included in your state’s newborn screening panel for both patient advocates and healthcare professionals. Resources include advocacy toolkits for newborn screening awareness month, information on legislation, literature, how screening works in your state, life with a genetic or metabolic condition identified through newborn screening, and more.
Learn more at https://www.babysfirsttest.org/
Follow Baby’s First Test on Facebook at Baby’sFirstTest , Instagram @babysfirsttest, and Twitter @BabysFirstTest
Expecting Health
Expecting Health works collectively with organizations, healthcare professionals, people, and communities to provide the right information from planning a pregnancy to early infant care. The organization has The Newborn Screening Family Education Program, also known as Navigate Newborn Screening. It is a program dedicated to developing opportunities for all families to learn about newborn screening through robust training and educational resources and events.
Learn more at https://expectinghealth.org/
National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders is a national rare disease advocacy organization. The organization improves identification and treatment for rare disorders through programs of education, advocacy, research, and patient services. NORD has launched a Newborn Screening Awareness page with resources and a link to each state’s policy report card. Learn more at https://rarediseases.org/advocate/policy-priorities/policy-issues/newborn-screening/
NORD’s team hosted a webinar on newborn screening. A recording can be found here: https://www.youtube.com/watch?v=cCQScP9zqGQ
Follow NORD on Facebook at National Organization for Rare Disorders, Instagram @nord_rare, and Twitter @RareDiseases