2016 Regular Session ENROLLED
SENATE CONCURRENT RESOL UTION NO. 3
BY SENATORS MILLS, HEWITT, PERRY AND GARY SMITH
A CONCURRENT RESOL UTION
To urge and request the Department of Health and Hospitals to submit a report by October 1,
2016, on the health benefits and healthcare costs associated with adding
Adrenoleukodystrophy (ALD) to the newborn screening panel and to add ALD to the
newborn screening panel no later than August 1, 2017.
WHEREAS, ALD is a lysosomal storage disorder caused by mutations in the
ABCD1 gene located on the X chromosome; and
WHEREAS, the overall incidence of ALD in the United States is estimated at 6 per
100,000 births regardless of sex; and
WHEREAS, the most serious form of ALD appears in children between 2.5 and 10
years of age and is associated with rapid neurological decline and death or disability within
three years after onset; and
WHEREAS, screening for ALD in a newborn child is not included in newborn
screening panels in most states, including Louisiana; and
WHEREAS, the United States Department of Health and Human Services Secretary's
Advisory Committee on Heritable Disorders in Newborns recommended to the secretary that
ALD be added to the newborn screening panel in September 2015; and
WHEREAS, on February 16, 2016, the secretary of the United States Department of
Health and Human Services accepted the recommendation to add ALD to the Recommended
Uniform Screening Panel; and
WHEREAS, while the secretary's acceptance did not make this a mandatory
screening for the states, it does acknowledge the value and importance to families and
newborns of conducting this screening; and
WHEREAS, R.S. 40:1081.2(A)(1) specifically identifies several tests to be
conducted on Louisiana newborns and provides the Department of Health and Hospitals with
the option to add other genetic conditions at their discretion; and
Page 1 of 2 SCR NO. 3 ENROLLED
WHEREAS, R.S. 40:1081.2(A)(1) does not provide deadlines for the Department of
Health and Hospitals to add such conditions within their discretion; and
WHEREAS, now that the United States Department of Health and Human Services
Secretary's Advisory Committee on Heritable Disorders in Newborns and Children has
recommended adding ALD and that recommendation has been approved by the secretary of
HHS, it is appropriate for DHH to take proactive steps to protect Louisiana newborns.
THEREFORE, BE IT RESOLVED by the Legislature of Louisiana that the
Department of Health and Hospitals submit a report by October 1, 2016, on the health
benefits and healthcare costs associated with adding ALD to the newborn screening panel.
The healthcare costs reported on shall include costs to the state lab operated through the
Office of Public Health and shall also include a financial analysis that details the costs
incurred by healthcare facilities and providers associated with testing for ALD in the
newborn screening panel and how those costs would be reimbursed by Medicaid and, to the
extent determinable, by commercial insurance.
BE IT FURTHER RESOLVED that the Department of Health and Hospitals should
add ALD to the newborn screening panel no later than August 1, 2017, under the authority
provided in R.S. 40:1081.2(A)(1).
BE IT FURTHER RESOLVED that a copy of this Resolution be transmitted to the
secretary of the Louisiana Department of Health and Hospitals.
PRESIDENT OF THE SENATE
SPEAKER OF THE HOUSE OF REPRESENTATIVES
Page 2 of 2