Hawaii 2024 Regular Session

Hawaii House Bill HB1719

Introduced
1/19/24  
Refer
1/24/24  
Introduced
1/19/24  

Caption

Relating To Duchenne Muscular Dystrophy.

Impact

The implications of this bill are significant for state healthcare practices, as it mandates a systematic approach to newborn screening for Duchenne muscular dystrophy. Furthermore, it includes a provision for data collection, requiring birthing facilities to report on the number of screenings conducted, results, and any exceptions. This will enable the Department of Health to gather important health data which can inform public health strategies and improve healthcare services for affected families.

Summary

House Bill 1719 proposes to amend Chapter 321 of the Hawaii Revised Statutes to implement mandatory testing for Duchenne muscular dystrophy (DMD) in newborns prior to their discharge from birthing facilities. This legislation aims to facilitate early diagnosis and better oversight of this specific genetic disorder affecting muscle strength. The bill sets forth the requirement that each birthing facility perform a screening test for DMD, ensuring that new parents are informed about their child's health conditions as early as possible.

Contention

One point of contention within the bill is the exemption clause that allows parents or guardians to opt out of the screening based on religious beliefs. While this respects individual rights and beliefs, it also raises questions about the potential for missed diagnoses, which can delay treatment and support for infants with DMD. Opponents may argue that such a provision could undermine the public health goal of early identification and intervention, while supporters may advocate for parental autonomy in medical decisions.

Companion Bills

No companion bills found.

Previously Filed As

HI SB1020

Newborn screening; Duchenne muscular dystrophy

HI SB1076

Newborn screening; Duchenne muscular dystrophy

HI SB1044

Relating to newborn screening tests for Duchenne muscular dystrophy.

HI HB2295

Relating to newborn screening tests for Duchenne muscular dystrophy.

HI HB05321

An Act Requiring Newborn Screening For Duchenne Muscular Dystrophy.

HI HB06919

An Act Requiring Newborn Screening For Duchenne Muscular Dystrophy.

HI HB1302

To Add Duchenne Muscular Dystrophy To The Universal Newborn Screening Act.

HI SB101

Duchenne Muscular Dystrophy; testing in the newborn screening system; require

HI HB05710

An Act Requiring Newborn Screening For Duchenne Muscular Dystrophy.

HI HB06573

An Act Requiring Newborn Screening For Duchenne Muscular Dystrophy.

Similar Bills

NJ AJR91

Designates September 7 through 13 of each year as "Duchenne Muscular Dystrophy Awareness Week" in New Jersey.

IL SB2658

NEWBORN SCREENING-DUCHENNE MD

IL SB3277

MUSCULAR DYSTROPHY AWARENESS

NJ SJR148

Designates September of each year as "Duchenne Muscular Dystrophy Awareness Month" in NJ.

NJ AJR219

Designates September of each year as "Duchenne Muscular Dystrophy Awareness Month" in NJ.

CA SCR67

Limb Girdle Muscular Dystrophy Awareness Day.

IL HR0636

MUSCULAR DYSTROPHY DAY

IL SR0820

MUSCULAR DYSTROPHY DAY