This docum ent does not reflect the intent or official position of the bill sponsor or House of Representatives.
STORAGE NAME: h0115c.HCA
DATE: 1/18/2024
HOUSE OF REPRESENTATIVES STAFF ANALYSIS
BILL #: CS/HB 115 Progressive Supranuclear Palsy and Other Neurodegenerative Diseases Policy
Workgroup
SPONSOR(S): Healthcare Regulation Subcommittee, Bankson and others
TIED BILLS: IDEN./SIM. BILLS: SB 186
REFERENCE ACTION ANALYST STAFF DIRECTOR or
BUDGET/POLICY CHIEF
1) Healthcare Regulation Subcommittee 16 Y, 0 N, As CS Guzzo McElroy
2) Health Care Appropriations Subcommittee 11 Y, 0 N Aderibigbe Clark
3) Health & Human Services Committee
SUMMARY ANALYSIS
Progressive supranuclear palsy (PSP) is a rare neurodegenerative disease that can severely inhibit an individual’s
balance and ability to walk, speech and ability to swallow, eye movements and vision, mood and behavior, and cognition.
There is no cure for PSP and treatment is limited to managing the signs and symptoms. PSP is not fatal, but
complications from PSP often lead to death, usually resulting from pneumonia or a serious fall. PSP worsens over time,
so early diagnosis is preferred, however, it shares many symptoms with, and is often misdiagnosed as other
neurogenerative diseases, including Parkinson’s disease and Alzheimer’s disease.
The bill creates the Justo R. Cortes Progressive Supranuclear Palsy Act to require the State Surgeon General to establish
a progressive supranuclear palsy and other neurogenerative diseases policy workgroup.
The bill tasks the workgroup with:
Identifying the aggregate number of people in this state who are diagnosed with PSP annually;
Identifying how data is collected regarding diagnoses of PSP and associated adverse outcomes;
Identifying how PSP impacts the lives of Floridians;
Identifying the standard of care for PSP surveillance, detection, and treatment;
Identifying emerging treatments, therapies, and research relating to PSP;
Developing a risk surveillance system to help providers identify those at a higher risk of developing PSP;
Developing policy recommendations to help improve patient awareness of PSP;
Developing policy recommendations to help improve surveillance and detection of patients who may be at a
higher risk of being diagnosed with PSP in licensed health care facilities, including hospitals, nursing homes,
assisted living facilities, residential treatment facilities, and ambulatory surgical centers;
Developing policy recommendations for guidelines used that affect the standard of care for patients with PSP; and
Developing policy recommendations relating to providing patients and their families with written notice of
increased risks of being diagnosed with PSP.
The bill requires the workgroup to be composed of health care providers, family members or caretakers of patients who
have been diagnosed with PSP and other neurogenerative diseases, advocates, and other interested parties and
associations. The bill requires the Speaker of the House of Representatives and the President of the Senate to appoint
two members each. Further, the bill requires the State Surgeon General to appoint the chair of the workgroup and
authorizes the chair to create subcommittees to assist with research, scheduling speakers on important subjects, and
drafting a workgroup report and policy recommendations. The bill authorizes meetings of the workgroup to be held via
teleconference or other electronic means.
Finally, the bill requires the Department of Health to submit an annual report and a final report with findings and
recommendations to the Governor, the President of the Senate, and the Speaker of the House of Representatives, by
January 4, 2026.
The bill has no fiscal impact on state or local government.
The bill provides an effective date of July 1, 2024. STORAGE NAME: h0115c.HCA PAGE: 2
DATE: 1/18/2024
FULL ANALYSIS
I. SUBSTANTIVE ANALYSIS
A. EFFECT OF PROPOSED CHANGES:
Background
Neurodegenerative Diseases
Neurodegenerative diseases are conditions that gradually destroy parts of the nervous system,
especially the brain.
1
These conditions usually develop slowly, and the effects and symptoms tend to
appear later in life.
2
Neurodegenerative diseases are permanent and incurable, but many are now
treatable, with the goal being to treat the symptoms and slow the progress of these conditions when
possible.
3
Neurodegenerative diseases include Alzheimer’s disease, Lewy body dementia, Parkinson’s
disease, amyotrophic lateral sclerosis (also known as Lou Gehrig’s disease), and progressive
supranuclear palsy.
4
Progressive Supranuclear Palsy
Progressive supranuclear palsy (PSP) is a neurodegenerative disease that affects an individual’s
balance and ability to walk, speech, swallowing, eye movements and vision, mood and behavior, and
cognition.
PSP is not fatal, but complications from PSP often lead to death.
5
The most common first sign of PSP
is trouble with balance, which can lead to abrupt and unexplained falls. A person with PSP will begin to
experience eye problems, such as difficulty opening and closing their eyes, blinking, seeing clearly or
moving their eyes side to side or up and down, which can also result in falls.
6
Falls causing bone
fractures and head trauma are a common cause of death in people with PSP.
7
Slow or slurred speech and difficulty swallowing are also common in individuals with PSP. The inability
to correctly swallow food and liquids can lead to leakage of food into the windpipe, which can result in
pneumonia, the most common cause of death in individuals with PSP.
8
Other symptoms include:
9
Depression;
Lack of motivation;
Changes in judgement, insight, and problem solving;
Difficulty finding words;
Forgetfulness;
Loss of interest in activities the person used to enjoy;
Increased irritability;
Sudden laughing, crying, or angry outbursts for no apparent reason;
Personality changes;
Blank stares with raised eyebrows; and
1
Cleveland Clinic, Neurodegenerative Diseases, available at https://my.clevelandclinic.org/health/diseases/24976-neurodegenerative-
diseases (last visited December 5, 2023).
2
Id.
3
Id.
4
Id.
5
Cleveland Clinic, Progressive Supranuclear Palsy, available at https://my.clevelandclinic.org/health/diseases/6096-progressive-
supranuclear-palsy (last visited December 5, 2023).
6
Id.
7
Id.
8
Id.
9
National Institute of Neurological Disorders and Stroke, Progressive Supranuclear Palsy, available at
https://www.ninds.nih.gov/health-information/disorders/progressive-supranuclear-palsy-psp (last visited December 5, 2023). STORAGE NAME: h0115c.HCA PAGE: 3
DATE: 1/18/2024
Insomnia.
Diagnosis
PSP is considered a rare disorder. It is currently estimated that 10 to 12 people per 100,000 are living
with PSP, about 30,000–40,000 in the United States.
10
However, recent autopsy studies indicate PSP
is under-diagnosed. These studies found PSP pathology in 2 to 4% of elderly people that had no
diagnosis of PSP before death.
11
Currently, there are several challenges to diagnosing someone in the early stages of PSP. There is no
diagnostic laboratory or radiologic test for PSP. Next, PSP shares many symptoms with, and is often
misdiagnosed as Parkinson’s disease.
12
However, unlike Parkinson’s disease, symptoms of PSP
typically begin later in life, usually in an individual’s late 60s or 70s.
13
PSP also progresses more rapidly
than Parkinson’s disease.
14
Finally, some patients with PSP present to their health care provider with
cognitive impairment and are misdiagnosed with dementia.
15
These patients ultimately develop
abnormalities of eye movement, speech, swallowing and gait in a few years.
16
As a result, most
patients are diagnosed fairly late in the course of the illness.
17
Treatment
Currently, there is no treatment that effectively stops or slows the progression of PSP, and symptoms
do not respond well to medications.
18
The cause of PSP is not known, but it is a form of tauopathy, in which abnormal phosphorylation of the
protein tau is associated with destruction of vital protein filaments in nerve cells, which is hypothesized
to cause the death of nerve cells.
19
Most experimental treatments are aimed at preventing tau
pathology.
20
Executive Branch Structure
Chapter 20, F.S., creates the organizational structure of the Executive Branch of state government,
including the creation of certain adjunct bodies to Executive Branch departments, agencies, or offices.
Such bodies include:
Committees or Task Forces: A “committee” or “task force” is an advisory body created without
specific statutory enactment for a time not to exceed one year or created by specific statutory
enactment for up to three years and appointed to study a specific problem and recommend a
solution or policy alternative. Its existence terminates upon the completion of its assignment.
Commissions: A “commission” is a body created by specific statutory enactment within a
department, the office of the Governor, or the Executive Office of the Governor and exercising
limited quasi-legislative or quasi- judicial powers, or both, independently of the head of the
department or Governor.
10
Cure PSP, Unlocking the Secrets of Brain Disease, available at https://www.psp.org/iwanttolearn/progressive-supranuclear-palsy/
(last visited December 5, 2023).
11
Kovacs GG, Milenkovic I, Wöhrer A, et al. Non-Alzheimer neurodegenerative pathologies and their combinations are more frequent
than commonly believed in the elderly brain: a community-based autopsy series. Acta Neuropathol 2013; 126: 365–84. See also
Yoshida K, Hata Y, Kinoshita K, Takashima S, Tanaka K, Nishida N. Incipient progressive supranuclear palsy is more common than
expected and may comprise clinicopathological subtypes: a forensic autopsy series. Acta Neuropathol. 2017 May;133(5):809-823. doi:
10.1007/s00401-016-1665-7. Epub 2017 Jan 7. PMID: 28064358.
12
Supra note 5.
13
Mayo Clinic, Diseases and Conditions, Supranuclear Palsy, available at https://www.mayoclinic.org/diseases-conditions/progressive-
supranuclear-palsy/symptoms-causes/syc-20355659 (last visited December 5, 2023).
14
Id.
15
Supra note 9.
16
Id.
17
Id.
18
Supra note 11.
19
Supra note 9.
20
Id. STORAGE NAME: h0115c.HCA PAGE: 4
DATE: 1/18/2024
Councils or Advisory Councils: A “council” or an “advisory council” is an advisory body created
by specific statutory enactment and appointed to function on a continuing basis for the study of
the problems arising in a specified functional or program area of state government and to
provide recommendations and policy alternatives.
Coordinating Councils: A “coordinating council” is an interdepartmental advisory body created
by law to coordinate programs and activities for which one department has primary
responsibility but in which one or more other departments have an interest.
Effect of the Bill
The bill creates the Justo R. Cortes Progressive Supranuclear Palsy Act to require the State Surgeon
General, to establish a progressive supranuclear palsy and other neurogenerative diseases policy
workgroup.
The bill tasks the workgroup with:
Identifying the aggregate number of people in this state who are diagnosed with PSP and other
neurogenerative diseases annually;
Identifying how data is collected regarding diagnoses of PSP and other neurogenerative
diseases, and adverse outcomes associated with these conditions;
Identifying how PSP and other neurogenerative diseases impact the lives of Floridians;
Identifying the standard of care for PSP and other neurogenerative diseases surveillance,
detection, and treatment;
Identifying emerging treatments, therapies, and research relating to PSP and other
neurogenerative 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 neurogenerative diseases;
Developing policy recommendations to help improve patient awareness of PSP and other
neurogenerative 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 neurogenerative 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 used that affect the standard of care
for patients with PSP and other neurogenerative diseases; and
Developing policy recommendations relating to providing patients and their families with written
notice of increased risks of being diagnosed with PSP and other neurogenerative diseases.
The bill requires the workgroup to be composed of health care providers, family members or caretakers
of patients who have been diagnosed with PSP and other neurogenerative diseases, advocates, and
other interested parties and associations. The bill requires the Speaker of the House of
Representatives and the President of the Senate to appoint two members each. Further, the bill
requires the State Surgeon General to appoint the chair of the workgroup and authorizes the chair to
create subcommittees to assist with research, scheduling speakers on important subjects, and drafting
a workgroup report and policy recommendations. The bill authorizes meetings of the workgroup to be
held via teleconference or other electronic means.
Finally, the bill requires the Department of Health (DOH) to submit an annual report and a final report
with findings and recommendations to the Governor, the President of the Senate, and the Speaker of
the House of Representatives, by January 4, 2026.
The bill provides an effective date of July 1, 2024.
B. SECTION DIRECTORY:
Section 1: Cites the act as the “Justo R. Cortes Progressive Supranuclear Palsy Act.” STORAGE NAME: h0115c.HCA PAGE: 5
DATE: 1/18/2024
Section 2: Creates s. 381.991, F.S., relating to progressive supranuclear palsy and other
neurogenerative diseases policy workgroup.
Section 3: Provides an effective date of July 1, 2024.
II. FISCAL ANALYSIS & ECONOMIC IMPACT STATEMENT
A. FISCAL IMPACT ON STATE GOVERNMENT:
1. Revenues:
None.
2. Expenditures:
None.
B. FISCAL IMPACT ON LOCAL GOVERNMENTS:
1. Revenues:
None.
2. Expenditures:
None.
C. DIRECT ECONOMIC IMPACT ON PRIVATE SECTOR:
None.
D. FISCAL COMMENTS:
None.
III. COMMENTS
A. CONSTITUTIONAL ISSUES:
1. Applicability of Municipality/County Mandates Provision:
Not applicable. The bill does not appear to affect local or municipal governments.
2. Other:
None.
B. RULE-MAKING AUTHORITY:
The bill does not require the implementation of rules.
C. DRAFTING ISSUES OR OTHER COMMENTS:
None.
IV. AMENDMENTS/COMMITTEE SUBSTITUTE CHANGES
On December 14, 2023, the Healthcare Regulation Subcommittee adopted two amendments and reported
the bill favorably as a committee substitute. The amendments:
Required DOH to establish the workgroup instead of AHCA; and STORAGE NAME: h0115c.HCA PAGE: 6
DATE: 1/18/2024
Required DOH, instead of AHCA, to submit the annual and final reports to the Governor and the
Legislature.
This analysis is drafted to the committee substitute as passed by the Healthcare Regulation Subcommittee.