BILL NUMBER: S6413
SPONSOR: SCARCELLA-SPANTON
 
TITLE OF BILL:
An act to amend the public health law, in relation to establishing a
state amyotrophic lateral sclerosis (ALS) and motor neuron disease (MND)
registry
 
PURPOSE OR GENERAL IDEA OF BILL:
To ensure the collection of accurate, reliable data in order to enhance
delivery of state services to individuals with ALS, identify high-risk
groups, support patient contact studies, serve as a valuable data
resource to prevent and optimally manage ALS and MND, assist in deter-
mining incidence and prevalence of ALS and MND more accurately, help
researchers study patterns of ALS over time, and ultimately help
researchers identify a cure for ALS.
 
SUMMARY OF SPECIFIC PROVISIONS:
Section 1 of the bill provides definitions, establishes a duty to report
cases of ALS/MND for healthcare practitioners, provides for the informed
consent of patients and enables patients to opt-out of the registry,
provides for the creation of a ALS and MN Disease registry and estab-
lishes which experts the department may consult with for the development
and implementation of this registry, provides data storing, reporting,
and sharing requirements for the department of health, and authorizes
the Commissioner of Health to make regulations to implement these
provisions.
Section 2 of the bill provides an effective date.
 
JUSTIFICATION:
Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative
disease that affects nerve cells in the brain and spinal cord. Over
time, it leads to gradual loss of muscle control, resulting in paralysis
and respiratory failure, as it impacts the neurons responsible for
voluntary movement. There is no cure for ALS, and the disease is always
fatal. The average life expectancy after diagnosis is between two to
five years, though some individuals live longer. ALS affects speech,
swallowing, movement, and breathing, but cognitive function is often
preserved.
At any given time, approximately 30,000 people in the United States are
living with ALS, with around 5,000 to 6,000 new cases diagnosed each
year. The estimated lifetime risk of developing the disease is about one
in three hundred. While ALS is more common in people over the age of
fifty-five, it can occur at any age. Most cases, about 90 percent, occur
sporadically with no known family history, while the remaining 10
percent are inherited through genetic mutations.
Currently, ALS case reporting in the United States is voluntary, relying
on self-enrollment in the National ALS Registry managed by the CDC.
While this Registry is a valuable tool for tracking ALS cases, its self-
reporting nature creates a major data gap-many people with ALS are never
registered, leaving researchers and policymakers with an incomplete
picture of the disease. An ALS registry will enable New York State to
conduct true population-based studies in ALS. The size of New York would
make it on par with the Netherlands registry, and far larger than the
ones in Ireland, Italy, and the UK. Pairing this with environmental and
lifestyle questionnaires would enable the identification of possible
disease-modifying interventions that are truly scalable. The scientific
value of such population studies is enormous and would easily dwarf the
environmental and epidemiological studies being done elsewhere.
 
PRIOR LEGISLATIVE HISTORY:
This is a new bill.
 
FISCAL IMPLICATIONS:
To be determined
 
EFFECTIVE DATE:
This act shall take effect on the 90th day after it shall have become
law.