SLS 16RS-170 ENGROSSED
2016 Regular Session
SENATE CONCURRENT RESOL UTION NO. 3
BY SENATORS MILLS, HEWITT, PERRY AND GARY SMITH
HEALTH/HOSPITALS DEPT. Requests the Department of Health and Hospitals to submit
a report by October 1, 2016, and to add Adrenoleukodystrophy (ALD) to the newborn
screening panel no later than August 1, 2017.
1 A CONCURRENT RESOL UTION
2 To urge and request the Department of Health and Hospitals to submit a report by October 1,
3 2016, on the health benefits and healthcare costs associated with adding
4 Adrenoleukodystrophy (ALD) to the newborn screening panel and to add ALD to the
5 newborn screening panel no later than August 1, 2017.
6 WHEREAS, ALD is a lysosomal storage disorder caused by mutations in the
7 ABCD1 gene located on the X chromosome; and
8 WHEREAS, the overall incidence of ALD in the United States is estimated at 6 per
9 100,000 births regardless of sex; and
10 WHEREAS, the most serious form of ALD appears in children between 2.5 and 10
11 years of age and is associated with rapid neurological decline and death or disability within
12 three years after onset; and
13 WHEREAS, screening for ALD in a newborn child is not included in newborn
14 screening panels in most states, including Louisiana; and
15 WHEREAS, the United States Department of Health and Human Services Secretary's
16 Advisory Committee on Heritable Disorders in Newborns recommended to the secretary that
17 ALD be added to the newborn screening panel in September 2015; and
18 WHEREAS, on February 16, 2016, the secretary of the United States Department of
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SLS 16RS-170 ENGROSSED
1 Health and Human Services accepted the recommendation to add ALD to the Recommended
2 Uniform Screening Panel; and
3 WHEREAS, while the secretary's acceptance did not make this a mandatory
4 screening for the states, it does acknowledge the value and importance to families and
5 newborns of conducting this screening; and
6 WHEREAS, R.S. 40:1081.2(A)(1) specifically identifies several tests to be
7 conducted on Louisiana newborns and provides the Department of Health and Hospitals with
8 the option to add other genetic conditions at their discretion; and
9 WHEREAS, R.S. 40:1081.2(A)(1) does not provide deadlines for the Department of
10 Health and Hospitals to add such conditions within their discretion; and
11 WHEREAS, now that the United States Department of Health and Human Services
12 Secretary's Advisory Committee on Heritable Disorders in Newborns and Children has
13 recommended adding ALD and that recommendation has been approved by the secretary of
14 HHS, it is appropriate for DHH to take proactive steps to protect Louisiana newborns.
15 THEREFORE, BE IT RESOLVED by the Legislature of Louisiana that the
16 Department of Health and Hospitals submit a report by October 1, 2016, on the health
17 benefits and healthcare costs associated with adding ALD to the newborn screening panel.
18 The healthcare costs reported on shall include costs to the state lab operated through the
19 Office of Public Health and shall also include a financial analysis that details the costs
20 incurred by healthcare facilities and providers associated with testing for ALD in the
21 newborn screening panel and how those costs would be reimbursed by Medicaid and, to the
22 extent determinable, by commercial insurance.
23 BE IT FURTHER RESOLVED that the Department of Health and Hospitals should
24 add ALD to the newborn screening panel no later than August 1, 2017, under the authority
25 provided in R.S. 40:1081.2(A)(1).
26 BE IT FURTHER RESOLVED that a copy of this Resolution be transmitted to the
27 secretary of the Louisiana Department of Health and Hospitals.
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SLS 16RS-170 ENGROSSED
The original instrument was prepared by Christine Arbo Peck. The following
digest, which does not constitute a part of the legislative instrument, was
prepared by Tammy Crain-Waldrop.
DIGEST
SCR 3 Engrossed 2016 Regular Session Mills
Requests the Department of Health and Hospitals to 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 also include a detailed financial analysis of how
those costs would be reimbursed by Medicaid and to the extent determinable, by commercial
insurance.
Requests that DHH add ALD to the newborn screening panel no later than January 1, 2017.
Summary of Amendments Adopted by Senate
Senate Floor Amendments to engrossed bill
1. Adds that healthcare costs reported include costs to the state lab operated
through the Office of Public Health and also include a detailed financial
analysis of how those costs would be reimbursed by Medicaid and to the
extent determinable, by commercial insurance.
2. Changes the resolution to an "urge and request".
3. Changes the date the report is due from May 1, 2016, to October 1, 2016.
4. Changes the date requesting the addition of ALD to the panel from Jan. 1,
2017, to August 1, 2017.
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