BILL ANALYSIS

AUTHOR'S / SPONSOR'S STATEMENT OF INTENT

Duchenne Muscular Dystrophy is a universally fatal, rare pediatric disease resulting from an absence of dystrophin�a 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 dystrophin�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 3,500�5,000 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 years�an average of 2.5 years after parents or caregivers first notice the symptoms of the disease. This lag time in diagnosis has remained unchanged in 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. And 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. 1667 would establish a newborn screening program for Duchenne Muscular Dystrophy.

As proposed, S.B. 1667 amends current law relating to newborn screening.

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 Subchapter A, Chapter 33, Health and Safety Code, by adding Section 33.00211, as follows:

Sec. 33.00211. DUCHENE MUSCULAR DYSTROPHY. Requires the Department of State Health Services (DSHS) to include Duchenne muscular dystrophy in the detection and treatment program established under Chapter 33 (Phenylketonuria, Other Heritable Diseases, Hypothyroidism, and Certain Other Disorders), in the screening for heritable diseases conducted under Subchapter B (Newborn Screening), and in the newborn screening services provided under Subchapter C (Newborn Screening Program Services), notwithstanding any provision of this chapter.

SECTION 12. Requires DSHS, as soon as practicable after the effective date of this Act, to implement Section 33.00211, Health and Safety Code.

SECTION 13. Effective date: September 1, 2023.