ENROLLED
2019 Regular Session
HOUSE CONCURRENT RESOL UTION NO. 34
BY REPRESENTATIVE DAVIS
A CONCURRENT RESOL UTION
To urge and request the Louisiana Department of Health to study the costs and benefits
associated with the potential addition of mucopolysaccharidosis type I and Pompe
disease to the state's newborn screening panel, to report findings of the study to the
legislative committees on health and welfare, and to add these conditions to the
newborn screening panel expeditiously when funding for this purpose is available.
WHEREAS, mucopolysaccharidosis type I, known commonly as "MPS I", is a
genetic condition that results in afflictions including but not limited to macrocephaly
(enlarged head), hydrocephalus (buildup of fluid in the brain), heart valve abnormalities,
hepatosplenomegaly (enlarged liver and spleen), macroglossia (enlarged tongue), and
laryngotracheal stenosis (narrowed airway); and
WHEREAS, though children with MPS I often have no signs or symptoms of the
condition at birth, the condition can be detected easily through a special screening; and
WHEREAS, children with severe MPS I generally begin to show signs and
symptoms of the disorder within the first year of life and experience a decline in intellectual
function and a more rapid disease progression, while children with an attenuated (less
severe) form have milder features that develop later in childhood; and
WHEREAS, in cases of severe MPS I, developmental delay is usually present by age
one and the child eventually loses basic functional skills; and
WHEREAS, children with severe MPS I usually have a shortened lifespan,
sometimes living only into late childhood, while individuals with attenuated MPS I typically
live into adulthood, but may have intellectual impairments and fatal heart disease or airway
obstruction; and
WHEREAS, according to the National Institutes of Health, severe MPS I occurs in
approximately one in one hundred thousand newborns and attenuated MPS I occurs in about
one in five hundred thousand newborns; and
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WHEREAS, Pompe disease is an inherited disorder caused by the buildup of a
complex sugar called glycogen in the cells of the body, impairing the ability of certain
organs and tissues, particularly muscles, to function normally; and
WHEREAS, like MPS I, Pompe disease can be detected easily through screening for
the condition; and
WHEREAS, the "classic" form of infantile-onset Pompe disease begins within a few
months of birth and causes muscle weakness, an enlarged liver, heart defects, breathing
problems, and failure of the infant to gain weight and grow at the expected rate (failure to
thrive); if untreated, this form of Pompe disease leads to death from heart failure in the first
year of life; and
WHEREAS, the "non-classic" form of infantile-onset Pompe disease usually appears
by age one and is characterized by delayed motor skills, progressive muscle weakness, an
enlarged heart, and serious breathing problems; most children with this form of the disease
live only into early childhood; and
WHEREAS, Pompe disease affects approximately one in forty thousand people in
the United States; and
WHEREAS, MPS I and Pompe disease are included on the list of disorders
comprising the Recommended Uniform Screening Panel, which is the set of conditions that
the secretary of the United States Department of Health and Human Services recommends
for inclusion in the newborn screening panel of each state; and
WHEREAS, the newborn screening panel of this state is established in R.S.
40:1081.2, which lists disorders for which all newborns in Louisiana must be screened and
authorizes the Louisiana Department of Health to add conditions to this list by rule; and
WHEREAS, as of the date of filing of this Resolution, the newborn screening panel
of this state does not include MPS I or Pompe disease.
THEREFORE, BE IT RESOLVED that the Legislature of Louisiana does hereby
urge and request the Louisiana Department of Health to study the costs and benefits
associated with the potential addition of mucopolysaccharidosis type I and Pompe disease
to the newborn screening panel of this state.
BE IT FURTHER RESOLVED that in conducting the study requested in this
Resolution, the department shall engage, collaborate with, and obtain information and
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perspective from the Genetic Diseases Program Advisory Committee created and provided
for in LAC 48:V.6901 et seq., and any other stakeholder groups as deemed necessary or
appropriate by the assistant secretary of the office of public health.
BE IT FURTHER RESOLVED that the department shall submit a written report of
its findings resulting from the study requested in this Resolution to the House Committee
on Health and Welfare and the Senate Committee on Health and Welfare on or before
January 1, 2020.
BE IT FURTHER RESOLVED that the department shall add mucopolysaccharidosis
type I and Pompe disease to the newborn screening panel expeditiously when funding for
this purpose is available.
BE IT FURTHER RESOLVED that a copy of this Resolution be transmitted to the
secretary of the Louisiana Department of Health and to each member of the Genetic Diseases
Program Advisory Committee.
SPEAKER OF THE HOUSE OF REPRESENTATIVES
PRESIDENT OF THE SENATE
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