BILL NUMBER: S7874
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.
 
SUMMARY OF PROVISIONS:
Section one adds a new tide nine to the public health law to authorize
the creation of a state frontotemporal degeneration (FTD) registry. This
section also defines Frontotemporal Degeneration and Dementia generally
for the purposes of this registry. It directs the Department of Health
to create a frontotenvoral degeneration registry advisory committee and
establishes the membership of the committee. The advisory committee is
directed to give guidance to the Department on what dementias, aside
from FTD, must be reported to the department. This section also requires
the Department, in conjunction with the advisory committee, to create
yearly reports for the Legislature and the Executive on the incidence
and prevalence of FTD and other dementias across New York. Finally, the
department is directed to create a webpage for public viewing of the
registry and other related information.
Section Two states 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,
and yet, it is one of the least known diseases of our time. Often first
misdiagnosed as a mental illness, Alzheimers, 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, behavior 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:
New Bill.
 
FISCAL IMPLICATION:
To be Determined.
 
EFFECTIVE DATE:
This act shall take effect on the thirtieth day after it shall have
become a law.