BILL NUMBER: S598B
SPONSOR: HINCHEY
 
TITLE OF BILL:
An act to amend the public health law, in relation to establishing a
state frontotemporal degeneration registry
 
PURPOSE::
To require hospitals and other health care providers to report the diag-
nosis of frontotemporal degeneration to the Department of Health and to
require the Department of Health to create and publish the data
collected in a registry and public website.
 
SUMMARY OF PROVISIONS::
Section one adds a new article 20-c to the public health law creating a
state frontotemporal degeneration (FTD) registry. This section:
-Defines FTD and dementia for purposes of this registry;
-Establishes a duty on providers to report diagnoses of FTD;
-Directs DOH to create an FTD registry for purposes of collection of
such data, in a manner suitable for research purposes;
-Directs DOH to create and maintain a public website including informa-
tion on FTD rates by County.
Section two is the effective date.
 
JUSTIFICATION::
Frontotemporal Degeneration (FTD) affects hundreds of thousands of Amer-
icans and is also the most common form of dementia in people under 60,
but is one of the least known diseases of our time. Often first misdiag-
nosed as a mental illness, Alzheimer's, or Parkinson's, it takes nearly
four years, on average, for a person to get an accurate diagnosis due in
part to the fact that there is very little research or funding allocated
to the treatment, prevention or understanding of FTD.
What is known is that FTD causes irreversible damage to the frontal and
temporal lobes of the brain, which brings changes to personality, behav-
ior and language. The effects of this form of dementia are felt, not
only by the person inflicted, but by every family member, requiring full
24/7 care and a duration that spans nearly a decade, resulting in an
economic burden that is almost twice that of Alzheimer's.
A better understanding of this disease, including its prevalence, along
with increased awareness among the public and the medical community at
large, is needed if we are going to work to one day eradicate FTD, but
to date, there is no focused data collection. This bill creates the
first statewide FTD registry in the country which will allow for volun-
tary tracking of all diagnoses of Frontotemporal Degeneration and other
forms of dementia so that we can understand the full scope of this
disease.
This legislation will bolster awareness among the medical community
helping to cut down on misdiagnoses, will create an advisory council to
help guide the Department of Health on FTD and dementia related care,
provide a more holistic picture of the current state of FTD and other
dementias across New York, and set up a public resource guide through
the Department of Health for those seeking help and support with an FTD
diagnosis.
In order to find a cure, we must first understand the disease. This bill
is the first step in raising awareness and collecting the data that we
need to save lives.
 
LEGISLATIVE HISTORY::
2024 - S7874 Passed Senate / A9938 referred to Health
 
FISCAL IMPLICATION::
To be Determined.
 
EFFECTIVE DATE::
This act shall take effect on the ninetieth day after it shall have
become law. The DOH public website effective date is January 1, 2027.