BILL ANALYSIS Senate Research Center C.S.S.B. 1044 By: Parker Health & Human Services 4/10/2025 Committee Report (Substituted) AUTHOR'S / SPONSOR'S STATEMENT OF INTENT Duchenne muscular dystrophy (DMD) is a universally fatal, rare pediatric disease resulting from an absence of dystrophina protein vital for muscle structure, function, and preservation. Its genetic cause is an alteration (mutation) in the DMD gene that provides the code to make dystrophinthat happens before birth and can be inherited or the result of a spontaneous new mutation. Without dystrophin, children with Duchenne experience progressive muscle deterioration and weakness, irreversibly losing the ability to walk, feed themselves, and breathe unassisted over time. Duchenne predominantly affects males, but, in rare cases, can also affect females. One of the most common fatal genetic disorders, DMD affects approximately one in every 3,5005,000 male births worldwide. Premature death typically occurs in a patient's mid- to late 20s or third decade of life. Despite advancements in treatment and physician education, the average age of diagnosis for Duchenne is five yearsan average of 2.5 years after parents or caregivers first notice the symptoms of the disease. This lag time in diagnosis has remained unchanged for over 20 years. Many families experience a lengthy, arduous journey to a diagnosis, involving months or years of unnecessary interventions and doctors' visits, with some parents reporting that concerns about their child's development are dismissed. Unfortunately, the diagnostic delay is worse for families of color and families from a low socioeconomic status. Because degeneration begins before birth, patients with Duchenne experience irreversible muscle damage while waiting for a diagnosis. Broad adoption of newborn screening for Duchenne would prevent unnecessary testing, shorten the time to diagnosis, and help close the gap in racial and ethnic disparities, empowering families to make earlier and better informed treatment decisions. S.B. 1044 would add screening for DMD to the newborn screening program conducted by the Texas Department of State Health Services (DSHS). Committee Substitute Updates the implementation date from September 1, 2027, to "upon completion of the laboratory." Adds that DSHS is required to "implement a provision of this act only if the legislature appropriates money specifically for that purpose." C.S.S.B. 1044 amends current law relating to newborn screening tests for Duchenne muscular dystrophy. RULEMAKING AUTHORITY This bill does not expressly grant any additional rulemaking authority to a state officer, institution, or agency. SECTION BY SECTION ANALYSIS SECTION 1. Amends the heading to Chapter 33, Health and Safety Code, to read as follows: CHAPTER 33. DUCHENNE MUSCULAR DYSTROPHY, PHENYLKETONURIA, OTHER HERITABLE DISEASES, HYPOTHYROIDISM, AND CERTAIN OTHER DISORDERS SECTION 2. Amends Section 33.001, Health and Safety Code, by adding Subdivision (6) to define "Duchenne muscular dystrophy." SECTION 3. Amends Sections 33.002(a) and (c), Health and Safety Code, as follows: (a) Requires the Department of State Health Services (DSHS) to carry out a program to combat morbidity, including intellectual disability, and mortality in persons who have Duchenne muscular dystrophy or other heritable diseases. (c) Makes conforming changes to this subsection. SECTION 4. Amends Section 33.011(a), Health and Safety Code, to make a conforming change. SECTION 5. Amends Section 33.014(a), Health and Safety Code, to make a conforming change. SECTION 6. Amends Section 33.031(a), Health and Safety Code, to make a conforming change. SECTION 7. Amends Section 33.032(a), Health and Safety Code, to make a conforming change. SECTION 8. Amends Section 203.355(c), Occupations Code, to make a conforming change. SECTION 9. Requires DSHS, upon completion of the laboratory described by Section 33.002(c) (relating to requiring DSHS to establish and maintain a laboratory to conduct, develop, and serve other necessary purposes to support the detection, prevention, and treatment of certain heritable diseases and conditions), Health and Safety Code, to implement the changes in law made by this Act to the newborn screening program under Chapter 33, Health Code, as amended by this Act. SECTION 10. Provides that DSHS is required to implement a provision of this Act only if the legislature appropriates money specifically for that purpose. Provides that, if the legislature does not appropriate money specifically for that purpose, DSHS is authorized, but is not required, to implement a provision of this Act using other money available for that purpose. SECTION 11. Effective date: September 1, 2025.
BILL ANALYSIS
Senate Research Center C.S.S.B. 1044
By: Parker
Health & Human Services
4/10/2025
Committee Report (Substituted)
Senate Research Center
C.S.S.B. 1044
By: Parker
Health & Human Services
4/10/2025
Committee Report (Substituted)
AUTHOR'S / SPONSOR'S STATEMENT OF INTENT
Duchenne muscular dystrophy (DMD) is a universally fatal, rare pediatric disease resulting from an absence of dystrophina protein vital for muscle structure, function, and preservation. Its genetic cause is an alteration (mutation) in the DMD gene that provides the code to make dystrophinthat happens before birth and can be inherited or the result of a spontaneous new mutation. Without dystrophin, children with Duchenne experience progressive muscle deterioration and weakness, irreversibly losing the ability to walk, feed themselves, and breathe unassisted over time. Duchenne predominantly affects males, but, in rare cases, can also affect females. One of the most common fatal genetic disorders, DMD affects approximately one in every 3,5005,000 male births worldwide. Premature death typically occurs in a patient's mid- to late 20s or third decade of life.
Despite advancements in treatment and physician education, the average age of diagnosis for Duchenne is five yearsan average of 2.5 years after parents or caregivers first notice the symptoms of the disease. This lag time in diagnosis has remained unchanged for over 20 years. Many families experience a lengthy, arduous journey to a diagnosis, involving months or years of unnecessary interventions and doctors' visits, with some parents reporting that concerns about their child's development are dismissed. Unfortunately, the diagnostic delay is worse for families of color and families from a low socioeconomic status. Because degeneration begins before birth, patients with Duchenne experience irreversible muscle damage while waiting for a diagnosis. Broad adoption of newborn screening for Duchenne would prevent unnecessary testing, shorten the time to diagnosis, and help close the gap in racial and ethnic disparities, empowering families to make earlier and better informed treatment decisions.
S.B. 1044 would add screening for DMD to the newborn screening program conducted by the Texas Department of State Health Services (DSHS).
Committee Substitute
* Updates the implementation date from September 1, 2027, to "upon completion of the laboratory."
* Adds that DSHS is required to "implement a provision of this act only if the legislature appropriates money specifically for that purpose."
C.S.S.B. 1044 amends current law relating to newborn screening tests for Duchenne muscular dystrophy.
RULEMAKING AUTHORITY
This bill does not expressly grant any additional rulemaking authority to a state officer, institution, or agency.
SECTION BY SECTION ANALYSIS
SECTION 1. Amends the heading to Chapter 33, Health and Safety Code, to read as follows:
CHAPTER 33. DUCHENNE MUSCULAR DYSTROPHY, PHENYLKETONURIA, OTHER HERITABLE DISEASES, HYPOTHYROIDISM, AND CERTAIN OTHER DISORDERS
SECTION 2. Amends Section 33.001, Health and Safety Code, by adding Subdivision (6) to define "Duchenne muscular dystrophy."
SECTION 3. Amends Sections 33.002(a) and (c), Health and Safety Code, as follows:
(a) Requires the Department of State Health Services (DSHS) to carry out a program to combat morbidity, including intellectual disability, and mortality in persons who have Duchenne muscular dystrophy or other heritable diseases.
(c) Makes conforming changes to this subsection.
SECTION 4. Amends Section 33.011(a), Health and Safety Code, to make a conforming change.
SECTION 5. Amends Section 33.014(a), Health and Safety Code, to make a conforming change.
SECTION 6. Amends Section 33.031(a), Health and Safety Code, to make a conforming change.
SECTION 7. Amends Section 33.032(a), Health and Safety Code, to make a conforming change.
SECTION 8. Amends Section 203.355(c), Occupations Code, to make a conforming change.
SECTION 9. Requires DSHS, upon completion of the laboratory described by Section 33.002(c) (relating to requiring DSHS to establish and maintain a laboratory to conduct, develop, and serve other necessary purposes to support the detection, prevention, and treatment of certain heritable diseases and conditions), Health and Safety Code, to implement the changes in law made by this Act to the newborn screening program under Chapter 33, Health Code, as amended by this Act.
SECTION 10. Provides that DSHS is required to implement a provision of this Act only if the legislature appropriates money specifically for that purpose. Provides that, if the legislature does not appropriate money specifically for that purpose, DSHS is authorized, but is not required, to implement a provision of this Act using other money available for that purpose.
SECTION 11. Effective date: September 1, 2025.