PART IX. LOUISIANA AMYOTROPHIC LATERAL
SCLEROSIS REGISTRY
§31.71. Legislative findings
The legislature hereby finds and declares that:
(1) Amyotrophic lateral sclerosis, or ALS, most often takes at least a year to be
diagnosed and is a diagnosis of exclusion, meaning that it becomes the diagnosis after other
options are exhausted.
(2) The average time living with the disease is two to five years and is often shorter
and seldom much longer unless invasive measures are taken, such as a tracheostomy.
(3) It costs over two hundred thousand dollars per year to live with a tracheostomy
tube, so ninety percent of the ALS population in the United States chooses not to undergo
the procedure.
(4) Because the disease progresses so rapidly, patients most often do not attend an
ALS clinic or long-term care clinic where their diagnosis would or could be reported to the
Centers for Disease Control and Prevention (CDC), the organization tasked with counting
those with ALS.
(5) The CDC program uses payor information and self-reporting to create their data
and acknowledges that their numbers are likely low, but they are beholden to the methods
outlined by Congress.
(6) Several studies have been done to show that in states with implemented efforts
to count those living with ALS, the number dramatically increased in each state.
(7) Louisiana currently reflects very few people with ALS north of Baton Rouge,
likely because they remain uncounted.
(8) The only state, Massachusetts, that has ALS as a mandatory reportable disease
has become a hub for ALS research.
Acts 2024, No. 511, §1, eff. June 10, 2024.