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Regular Session, 2014
HOUSE CONCURRENT RESOLUTI ON NO. 81
BY REPRESENTATIVE PEARSON
A CONCURRENT RESOLUTI ON
To authorize and direct the Department of Health and Hospitals to submit a report to the
Senate and House committees on health and welfare evaluating the health benefits
and healthcare cost of adding adrenoleukodystrophy to the list of mandatory
screenings performed on newborns when it is recommended by the United States
Department of Health and Human Services Secretary's Advisory Committee on
Heritable Disorders in Newborns and Children, the American College of Medical
Genetics, and the Louisiana Newborn Screening Advisory Committee.
WHEREAS, adrenoleukodystrophy is a genetically determined neurological disorder
that affects one in every seventeen thousand nine hundred boys worldwide; and
WHEREAS, the presentation of symptoms occurs somewhere between the ages of
four and ten; and
WHEREAS, adrenoleukodystrophy affects the brain with demyelination, damage to
the myelin sheath, an insulating membrane that surrounds nerve cells in the brain; and
WHEREAS, adrenoleukodystrophy does not have any specific treatment regimen and
the prognosis is poor; and
WHEREAS, the childhood form is a progressive disease that declines with age; and
WHEREAS, screening for adrenoleukodystrophy in a newborn child is relatively new
and, at this time, the United States Department of Health and Human Services Secretary's
Advisory Committee on Heritable Disorders in Newborns and Children, the American
College of Medical Genetics, and the Louisiana Newborn Screening Advisory Committee
have not recommended screening newborn children for adrenoleukodystrophy.
THEREFORE, BE IT RESOLVED by the Legislature of Louisiana that the
Department of Health and Hospitals shall submit a report to the House and Senate
committees on health and welfare evaluating the health benefits and healthcare cost of ENROLLEDHCR NO. 81
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adding adrenoleukodystrophy to the current list of mandatory newborn screenings to be
performed when it is recommended by the United States Department of Health and Human
Services Secretary's Advisory Committee on Heritable Disorders in Newborns and Children,
the American College of Medical Genetics, and the Louisiana Newborn Screening Advisory
Committee.
BE IT FURTHER RESOLVED that a copy of this Resolution be transmitted to the
secretary of the Department of Health and Hospitals.
SPEAKER OF THE HOUSE OF REPRESENTATI VES
PRESIDENT OF THE SENATE