The Florida Senate
BILL ANALYSIS AND FISCAL IMPACT STATEMENT
(This document is based on the provisions contained in the legislation as of the latest date listed below.)
Prepared By: The Professional Staff of the Committee on Fiscal Policy
BILL: CS/SB 186
INTRODUCER: Health Policy Committee and Senator Brodeur and others
SUBJECT: Progressive Supranuclear Palsy and Other Neurodegenerative Diseases Policy
Committee
DATE: January 29, 2024 REVISED:
ANALYST STAFF DIRECTOR REFERENCE ACTION
1. Morgan Brown HP Fav/CS
2. Gerbrandt McKnight AHS Favorable
3. Morgan Yeatman FP Favorable
Please see Section IX. for Additional Information:
COMMITTEE SUBSTITUTE - Technical Changes
I. Summary:
CS/SB 186 creates undesignated sections of the Laws of Florida, requiring the State Surgeon
General to establish a progressive supranuclear palsy and other neurodegenerative diseases
policy committee (committee) to identify the impact of progressive supranuclear palsy and other
neurodegenerative diseases on Floridians, while providing recommendations to improve health
awareness, detection, and outcomes.
The bill provides administrative support to the committee, establishes the membership of the
committee, and authorizes the committee chair to create subcommittees. The bill requires that
members of the committee be appointed by September 1, 2024, and that the initial meeting be
held by October 1, 2024. All meetings of the committee must take place via teleconference or
other electronic means.
The bill requires the State Surgeon General to submit a progress report detailing committee
activities, as well as findings and recommendations, to the Governor, the President of the Senate,
and the Speaker of the House of Representatives by January 4, 2025. The bill requires the State
Surgeon General to submit a final report to the Governor and the Legislature by January 4, 2026.
The bill provides that, once enacted, the act may be cited as the “Justo R. Cortes Progressive
Supranuclear Palsy Act.”
BILL: CS/SB 186 Page 2
The bill has no fiscal impact on state revenues or state expenditures.
The bill provides an effective date of July 1, 2024.
II. Present Situation:
Neurodegenerative disease is an umbrella term used for a plethora of conditions that gradually
damage and destroy parts of the nervous system, especially areas of the brain. The effects and
symptoms of these diseases tend to appear later in life and usually develop slowly.1
Cases of such disorders are rare, with researchers estimating that neurodegenerative diseases
affect more than 50 million people worldwide; however, most of these conditions are strongly
attributed to age and are far more likely in persons over 65 years old.2 According to the U.S.
Census Bureau’s 2020 population estimates, more than 55 million Americans are age 65 or older,
one-fourth of whom live in California, Florida, and Texas.3 Florida’s older residents compose
21.3 percent of the population, or approximately 4,638,000 of the state’s 21,733,000 estimated
residents.4
Diagnosing a neurodegenerative disease varies based on the suspected condition:
Neurologic exam by a healthcare provider to discuss symptoms and medical history.
Laboratory testing, such as blood and genetic tests.
Imaging scans, such as computed tomography and magnetic resonance imaging scans.
Histopathology, or microscopic tissue analysis, after death. Some neurodegenerative diseases
are suspected, but a confirmed diagnosis is only possible after examining brain samples post
autopsy.
Other tests are possible and continue to be developed.5
Neurodegenerative diseases are incurable and irreversible, but some of them can be treated in
order to manage, limit, or slow symptom advancement and the resulting complications. Other
neurodegenerative diseases have no treatment, meaning a more reactionary approach is taken
versus preventive, i.e. treat the symptoms to promote the best quality of life.6
Progressive Supranuclear Palsy
Progressive supranuclear palsy (PSP)7 is a rare, complex condition that affects the brain,
resulting in muscle weakness that worsens over time, limiting the ability to walk, and causing
1
Cleveland Clinic, Neurodegenerative Diseases, available at https://my.clevelandclinic.org/health/diseases/24976-
neurodegenerative-diseases (last visited Dec. 1, 2023).
2
Supra note 1.
3
Population Reference Bureau, Which U.S. States Have the Oldest Populations?, available at
https://www.prb.org/resources/which-us-states-are-the-oldest/ (last visited Dec. 1, 2023).
4
Id.
5
Supra note 1.
6
Id.
7
Johns Hopkins Medicine, Progressive Supranuclear Palsy, available at
https://www.hopkinsmedicine.org/health/conditions-and-diseases/progressive-supranuclear-palsy (last visted Dec. 1, 2023).
BILL: CS/SB 186 Page 3
visual impairment. It is known as an atypical form of parkinsonism8, as well as a motor neuron
disease.9
PSP Risk Factors
PSP occurs when brain cells in an area of the brain stem become damaged, but how or why these
cells are damaged remains unknown. Although anyone could develop PSP, it is more common in
men and those of late middle age or older.10
PSP Symptoms and Complications
Early signs of PSP can be subtle, but disease progression increases symptom severity. Problems
with balance and rigidity or discomfort while walking often tend to be the first indicators of
PSP.11
Other symptoms include:12
Increased forgetfulness and irritability.
Unusual emotional outbursts, such as crying or laughing unexpectedly or at inappropriate
times.
Irrational anger.
Hand tremors.
Trouble controlling eye movement.
Blurred vision.
Slurred speech.
Trouble swallowing.
Dementia.
Depression.
Inability to control the eyelids, such as unwanted blinking or eye opening difficulty.
A careful evaluation of symptoms can help diagnose PSP, but signs often mirror those of
Parkinson’s disease, or even an inner ear infection, increasing the likelihood of misdiagnosis.
However, key differences include:13
Significant difficulty with speech and swallowing.
Problems with eye movement, specifically when looking up or down.
Leaning and falling backward versus forward.
8
Cleveland Clinic, Parkinsonism, available at https://my.clevelandclinic.org/health/diseases/22815-parkinsonism (last
visited Dec. 1, 2023).
9
Cleveland Clinic, Neurodegenerative Diseases, available at https://my.clevelandclinic.org/health/diseases/24976-
neurodegenerative-diseases (last visited Dec. 1, 2023).
10
Johns Hopkins Medicine, Progressive Supranuclear Palsy, available at
https://www.hopkinsmedicine.org/health/conditions-and-diseases/progressive-supranuclear-palsy (last visted Dec. 1, 2023).
11
Id.
12
Id.
13
Id.
BILL: CS/SB 186 Page 4
While PSP is not fatal, symptoms will worsen and, like all neurodegenerative diseases, it cannot
be cured. Nevertheless, complications, such as pneumonia from the inhalation of food particles
while choking, can be life threatening.14
PSP Treatment
Although there is no medicine or procedure to completely control the symptoms of PSP, there
are strategies and methods available to assist in the management of symptoms, such as
medications for the treatment of Parkinson’s disease to improve balance, flexibility of the
muscles, and depression.15
Other treatment options include:16
Special glasses with prisms to improve vision.
A weighted tool or aid to assist in walking and prevent falling backwards.
Physical therapy and exercise to improve flexibility and decrease muscle atrophy.
A feeding tube for when swallowing becomes too difficult.
Other Neurodegenerative Diseases
Other types of neurodegenerative diseases include:17
Dementia-type diseases, which can cause progressive damage to various areas of the brain,
resulting in neuron death and a wide range of symptoms. These include Alzheimer’s disease,
frontotemporal dementia, chronic traumatic encephalopathy, Lewy body dementia, and
limbic predominant age-related TDP-43 encephalopathy.
Demyelinating diseases, which involve myelin damage or loss and can affect the sending and
relaying of nerve signals. These include conditions such as multiple sclerosis and
neuromyelitis optica spectrum disorder.
Parkinsonism-type diseases, which involve damage to specific neurons in the brain that help
manage coordination and precise control of muscle movements. These include Parkinson’s
disease and other forms of parkinsonism.
Motor neuron diseases, which involve the death of neurons that control movement. These
include conditions such as amyotrophic lateral sclerosis and PSP.
Risk Factors
Although there are multiple causation factors attributed to most neurodegenerative diseases, a
few have been identified as a stronger indicator than others.18
Age: Older individuals are more likely to develop a neurodegenerative disease.
Genetics: Spontaneous mutations can occur, specific mutations can be inherited, and a
combination of genes can increase the risk of developing a neurodegenerative disease.
14
Id.
15
Id.
16
Id.
17
Cleveland Clinic, Neurodegenerative Diseases, available at https://my.clevelandclinic.org/health/diseases/24976-
neurodegenerative-diseases (last visited Dec. 1, 2023).
18
Id.
BILL: CS/SB 186 Page 5
Environment: Exposure to pollution, chemicals and toxins, certain types of infections,
address, etc.
Medical history: Specific medical events can catalyze or exacerbate some neurodegenerative
conditions.
Lifestyle: Habits, routine, and choices, such as food, fitness, smoking, etc.
Symptoms and Complications
The symptoms of neurodegenerative diseases can vary widely, even among people with the same
condition, as each brain is unique, the causes of the disease can differ, and the symptoms are
dependent on the part of the brain or nervous system that has been affected. However, a
commonality in those diagnosed is the correlation between progression and independence, i.e.,
the further the disease advances, the less self-reliant an afflicted individual becomes.19
In general, the following symptoms and complications are associated with neurodegenerative
diseases:20
Dementia-type diseases: Confusion, memory loss, trouble thinking or concentrating, and
behavior changes.
Demyelinating diseases: Tingling or numbness, pain, muscle spasms, weakness and
paralysis, coordination issues, and fatigue.
Parkinsonism-type diseases: Slowed movements, shaking and tremors, balance problems,
shuffling steps, and hunched posture, as well as decreased strength, flexibility, agility, and
reflexes, increasing the risk of falls and fractures.
Motor neuron diseases: Muscle weakness that progresses to paralysis, as well as increased
risk of pneumonia and other respiratory conditions.
Executive Branch Structure
Chapter 20, F.S., creates the organizational structure of the Executive Branch of state
government, and s. 20.03, F.S., provides definitions for uniform nomenclature throughout the
structure of the Executive Branch, including bodies created as adjuncts to Executive Branch
departments, agencies, or offices. A “committee” or “task force” means an advisory body created
without specific statutory enactment for a time not to exceed one year or created by specific
statutory enactment for a time not to exceed three years and appointed to study a specific
problem and recommend a solution or policy alternative with respect to that problem. Its
existence terminates upon the completion of its assignment.
III. Effect of Proposed Changes:
Section 1 provides that, once enacted, the act may be cited as the “Justo R. Cortes Progressive
Supranuclear Palsy Act.”
Section 2 creates a non-statutory section of the Laws of Florida to require the State Surgeon
General to establish a progressive supranuclear palsy (PSP) and other neurodegenerative diseases
policy committee, a committee as defined in s. 20.03, F.S. The bill requires the Department of
19
Id.
20
Id.
BILL: CS/SB 186 Page 6
Health (DOH) to provide staff and administrative support to the committee for the purposes of
carrying out the following duties and responsibilities:
Identifying the aggregate number of people diagnosed with PSP and other neurodegenerative
diseases each year in this state.
Identifying how data is collected regarding diagnoses of PSP and other neurodegenerative
diseases and adverse health outcomes associated with such conditions.
Identifying how PSP and other neurodegenerative diseases impact the lives of people in the
state.
Identifying the standard of care for the surveillance, detection, and treatment of PSP and
other neurodegenerative diseases.
Identifying emerging treatments, therapies, and research relating to PSP and other
neurodegenerative diseases.
Developing a risk surveillance system to help health care providers identify patients who
may be at a higher risk of developing PSP and other neurodegenerative diseases.
Developing policy recommendations to help improve patient awareness of PSP and other
neurodegenerative diseases.
Developing policy recommendations to help improve surveillance and detection of patients
who may be at a higher risk of being diagnosed with PSP and other neurodegenerative
diseases in licensed health care facilities, including hospitals, nursing homes, assisted living
facilities, residential treatment facilities, and ambulatory surgical centers.
Developing policy recommendations relating to guidelines that affect the standard of care for
patients with PSP and other neurodegenerative diseases.
Developing policy recommendations relating to providing patients and their families with
written notice of increased risks of being diagnosed with PSP and other neurodegenerative
diseases.
The bill requires that the committee be composed of 20 members, including the State Surgeon
General, health care providers, family members or caretakers of patients who have been
diagnosed with PSP and other neurodegenerative diseases, advocates, and other interested parties
and associations.
The bill requires the President of the Senate and the Speaker of the House of Representatives to
each appoint two members, and the State Surgeon General to appoint the chair and all other
members of the committee. Members of the committee must be appointed by September 1, 2024,
under the bill and shall serve without compensation for the entirety of the committee’s existence.
The bill authorizes the chair to create subcommittees to help with research, scheduling speakers
on important subjects, and drafting a committee report and policy recommendations. Meetings of
the committee must be held through teleconference or other electronic means. The committee
must meet for its initial meeting by October 1, 2024. Thereafter, the committee must meet upon
the call of the chair or the request of a majority of the members. Notices for any scheduled
meetings of the committee must be published in advance on the DOH’s website.
The bill requires the State Surgeon General to submit a progress report detailing committee
activities, as well as findings and recommendations, to the Governor, the President of the Senate,
and the Speaker of the House of Representatives by January 4, 2025. The bill also requires the
BILL: CS/SB 186 Page 7
State Surgeon General to submit a final report to the Governor and the Legislature by January 4,
2026. Both reports must be made available on the DOH’s website.
The bill provides t