HLS 14RS-2243 REENGROSSED
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Regular Session, 2014
HOUSE CONCURRENT RESOLUTI ON NO. 81
BY REPRESENTATIVE PEARSON
CHILDREN/NEWBORNS: Directs the Dept. of Health and Hospitals to submit a report to
the House Health and Welfare Committee evaluating the health benefits and
healthcare costs of adding adrenoleukodystrophy to the mandatory screenings to be
performed on a newborn child
A CONCURRENT RESOLUTI ON1
To authorize and direct the Department of Health and Hospitals to amend LAC 48:V.63032
to add adrenoleukodystrophy to the list of mandatory screenings performed on3
newborns when it is recommended by the United States Department of Health and4
Human Services Secretary's Advisory Committee on Heritable Disorders in5
Newborns and Children, the American College of Medical Genetics, and the6
Louisiana Newborn Screening Advisory Committee.7
WHEREAS, adrenoleukodystrophy is a genetically determined neurological disorder8
that affects one in every seventeen thousand nine hundred boys worldwide; and9
WHEREAS, the presentation of symptoms occurs somewhere between the ages of10
four and ten; and11
WHEREAS, adrenoleukodystrophy affects the brain with demyelination, damage to12
the myelin sheath, an insulating membrane that surrounds nerve cells in the brain; and13
WHEREAS, adrenoleukodystrophy does not have any specific treatment regimen and14
the prognosis is poor; and15
WHEREAS, the childhood form is a progressive disease that declines with age; and16
WHEREAS, screening for adrenoleukodyst rophy in a newborn child is relatively new17
and, at this time, the United States Department of Health and Human Services Secretary's18
Advisory Committee on Heritable Disorders in Newborns and Children, the American19 HLS 14RS-2243 REENGROSSED
HCR NO. 81
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College of Medical Genetics, and the Louisiana Newborn Screening Advisory Committee1
have not recommended screening newborn children for adrenoleukodystrophy.2
THEREFORE, BE IT RESOLVED by the Legislature of Louisiana that the3
Department of Health and Hospitals shall submit a report to the House Health and Welfare4
Committee evaluating the health benefits and health care cost of adding5
adrenoleukodystrophy to the current list of mandatory newborn screenings to be performed6
when it is recommended by the United States Department of Health and Human Services7
Secretary's Advisory Committee on Heritable Disorders in Newborns and Children, the8
American College of Medical Genetics, and the Louisiana Newborn Screening Advisory9
Committee.10
BE IT FURTHER RESOLVED that a copy of this Resolution be transmitted to the11
secretary of the Department of Health and Hospitals.12
DIGEST
The digest printed below was prepared by House Legislative Services. It constitutes no part
of the legislative instrument. The keyword, one-liner, abstract, and digest do not constitute
part of the law or proof or indicia of legislative intent. [R.S. 1:13(B) and 24:177(E)]
Pearson HCR No. 81
Directs the Dept. of Health and Hospitals to submit a report to the House Health and Welfare
Committee evaluating the health benefits and healthcare cost of adding
adrenoleukodystrophy to the mandatory screenings to be performed on a newborn child.
Summary of Amendments Adopted by House
House Floor Amendments to the engrossed concurrent resolution.
1. Changed the requirement that the Dept. of Health and Hospitals amend LAC
48:V.6303 to add adrenoleukodystrophy to the mandatory screenings to be
performed on a newborn child to a requirement that DHH submit a report to the
House Health and Welfare Committee evaluating the health benefits and health
care cost of adding adrenoleukodystrophy.
2. Deleted reference to LAC 48:V.6303.