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.