[Congressional Record Volume 156, Number 132 (Tuesday, September 28, 2010)]
[House]
[Pages H7185-H7186]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
{time} 2200
NATIONAL NEUROLOGICAL DISEASES SURVEILLANCE SYSTEM ACT OF 2010
Mr. PALLONE. Mr. Speaker, I move to suspend the rules and pass the
bill (H.R. 1362) to amend the Public Health Service Act to provide for
the establishment of permanent national surveillance systems for
multiple sclerosis, Parkinson's disease, and other neurological
diseases and disorders, as amended.
The Clerk read the title of the bill.
The text of the bill is as follows:
H.R. 1362
Be it enacted by the Senate and House of Representatives of
the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``National Neurological
Diseases Surveillance System Act of 2010''.
SEC. 2. NATIONAL NEUROLOGICAL DISEASES SURVEILLANCE SYSTEM.
Part P of title III of the Public Health Service Act (42
U.S.C. 280g et seq.) is amended by adding at the end the
following:
``SEC. 399V-5 SURVEILLANCE OF NEUROLOGICAL DISEASES.
``(a) In General.--The Secretary, acting through the
Director of the Centers for Disease Control and Prevention,
shall--
``(1) enhance and expand infrastructure and activities to
track the epidemiology of neurological diseases, including
multiple sclerosis and Parkinson's disease; and
``(2) incorporate information obtained through such
activities into a statistically-sound, scientifically-
credible, integrated surveillance system, to be known as the
National Neurological Diseases Surveillance System.
``(b) Research.--The Secretary shall ensure that the
National Neurological Diseases Surveillance System is
designed in a manner that facilitates further research on
neurological diseases.
``(c) Content.--In carrying out subsection (a), the
Secretary--
``(1) shall provide for the collection and storage of
information on the incidence and prevalence of neurological
diseases in the United States;
``(2) to the extent practicable, shall provide for the
collection and storage of other available information on
neurological diseases, such as information concerning--
``(A) demographics and other information associated or
possibly associated with neurological diseases, such as age,
race, ethnicity, sex, geographic location, and family
history;
``(B) risk factors associated or possibly associated with
neurological diseases, including genetic and environmental
risk factors; and
``(C) diagnosis and progression markers;
``(3) may provide for the collection and storage of
information relevant to analysis on neurological diseases,
such as information concerning--
``(A) the epidemiology of the diseases;
``(B) the natural history of the diseases;
``(C) the prevention of the diseases;
``(D) the detection, management, and treatment approaches
for the diseases; and
``(E) the development of outcomes measures; and
``(4) may address issues identified during the consultation
process under subsection (d).
``(d) Consultation.--In carrying out this section, the
Secretary shall consult with individuals with appropriate
expertise, including--
``(1) epidemiologists with experience in disease
surveillance or registries;
``(2) representatives of national voluntary health
associations that--
``(A) focus on neurological diseases, including multiple
sclerosis and Parkinson's disease; and
``(B) have demonstrated experience in research, care, or
patient services;
``(3) health information technology experts or other
information management specialists;
``(4) clinicians with expertise in neurological diseases;
and
``(5) research scientists with experience conducting
translational research or utilizing surveillance systems for
scientific research purposes.
[[Page H7186]]
``(e) Grants.--The Secretary may award grants to, or enter
into contracts or cooperative agreements with, public or
private nonprofit entities to carry out activities under this
section.
``(f) Coordination With Other Federal Agencies.--Subject to
subsection (h), the Secretary shall make information and
analysis in the National Neurological Diseases Surveillance
System available, as appropriate, to Federal departments and
agencies, such as the National Institutes of Health, the Food
and Drug Administration, the Centers for Medicare & Medicaid
Services, the Agency for Healthcare Research and Quality, the
Department of Veterans Affairs, and the Department of
Defense.
``(g) Public Access.--Subject to subsection (h), the
Secretary shall make information and analysis in the National
Neurological Diseases Surveillance System available, as
appropriate, to the public, including researchers.
``(h) Privacy.--The Secretary shall ensure that privacy and
security protections applicable to the National Neurological
Diseases Surveillance System are at least as stringent as the
privacy and security protections under HIPAA privacy and
security law (as defined in section 3009(a)(2)).
``(i) Report.--Not later than 4 years after the date of the
enactment of this section, the Secretary shall submit a
report to the Congress concerning the implementation of this
section. Such report shall include information on--
``(1) the development and maintenance of the National
Neurological Diseases Surveillance System;
``(2) the type of information collected and stored in the
System;
``(3) the use and availability of such information,
including guidelines for such use; and
``(4) the use and coordination of databases that collect or
maintain information on neurological diseases.
``(j) Definition.--In this section, the term `national
voluntary health association' means a national nonprofit
organization with chapters, other affiliated organizations,
or networks in States throughout the United States.
``(k) Authorization of Appropriations.--To carry out this
section, there is authorized to be appropriated $5,000,000
for each of fiscal years 2012 through 2016.''.
The SPEAKER pro tempore. Pursuant to the rule, the gentleman from New
Jersey (Mr. Pallone) and the gentleman from Texas (Mr. Burgess) each
will control 20 minutes.
The Chair recognizes the gentleman from New Jersey.
General Leave
Mr. PALLONE. Mr. Speaker, I ask unanimous consent that all Members
may have 5 legislative days in which to revise and extend their remarks
and to include extraneous material into the Record.
The SPEAKER pro tempore. Is there objection to the request of the
gentleman from New Jersey?
There was no objection.
Mr. PALLONE. I yield myself such time as I may consume.
Mr. Speaker, I rise today in strong support of H.R. 1362, the
National Neurological Diseases Surveillance System Act of 2010.
H.R. 1362 seeks to improve our understanding of multiple sclerosis,
Parkinson's disease and other neurological diseases by directing the
Centers for Disease Control and Prevention to carry out systematic data
collection analysis and interpretation.
I ask my colleagues to support H.R. 1362, and I reserve the balance
of my time.
Mr. BURGESS. I yield myself such time as I may consume.
Mr. Speaker, I rise tonight in strong support of H.R. 1362, which I
authored with Mr. Van Hollen.
There are over 400,000 Americans living with MS and millions of more
Americans who live with some form of neurological disorder.
As co-chairman of the Congressional MS Caucus, I have been working to
further research into the development of MS and other neurological
disorders to help the population of Americans living with MS. I firmly
believe that a national surveillance system will be a critical first
step toward allowing our researchers access to information that could
be the key to finding cures.
The other night, I was told that we are running for second base in
our efforts to cure neurological diseases and that we have never tagged
first. This bill, H.R. 1362, the National Neurological Diseases
Surveillance System Act of 2010, is our first base.
Currently, there is no formal coordinated system to track and collect
data on these diseases, and the lack of comprehensive data collection
impedes progression to finding a cure. In fact, the last national study
of the prevalence of MS was conducted 34 years ago. This integrated
research will help drive innovation and will provide a solid
understanding of how factors such as gender and age influence disease
prevalence.
As diagnoses are made, we will have the ability to create progression
markers, allowing for the compilation of the data and the construction
of treatments for future patients with similar backgrounds. Through
these efforts, we will be able to disseminate information and to
encourage high-risk populations to connect to the available resources.
This legislation will emphasize the study of the epidemiology of
neurological diseases. It is vital that we examine previous trends of
the disease as they relate to geography, environmental factors, and
heredity in order to forecast future trends. In order to advance, we
must create a foundation of research for the millions of Americans
suffering from MS, Parkinson's, Alzheimer's, and other conditions.
The National Neurological Diseases Surveillance System Act of 2010
has wide support, including by the National MS Society and the
Parkinson's Action Network, among many others.
The bill before us reflects countless hours of negotiation. I want to
thank Anne Morris and Ryan Long, who are with the committee, as well as
Ray Thorn, who is with Mr. Van Hollen's office, for their work. This
bill went through regular order. It passed the Energy and Commerce
Committee unanimously, and it has come to the floor a better product
because of the bipartisan work.
I have spoken to medical students several times recently, and I have
told them that the tools and technologies they will have at their
disposal will revolutionize the practice of medicine. This bill is part
of that future.
A surveillance system will aid doctors on the ground right now who
are struggling with ensuring a proper diagnosis. For example, with an
MS examination, it generally reveals evidence of neurologic
dysfunction, often asymptomatic in other locations. It is not science
fiction to think that, in the future, a scientist noticing a genetic or
blood marker in certain patients will be able to use surveillance
systems like the ones created under this bill to link genetic factors
with occupations, environmental and other demographic information.
As diagnoses are made, we will have the ability to create progression
markers, which will help researchers compile the data and construct
treatments for future patients with similar backgrounds. That is how we
will get the vaccines, the treatments, and the cures for the next
generation.
Future physicians will be able to tailor treatment to patients based
on previous results and will be able to disseminate the information and
encourage high-risk populations to connect to available resources, but
we need to put in place the first building blocks. The epidemiologic
evidence supports the role of environmental exposure to conditions like
multiple sclerosis. MS also correlates with high socioeconomic status,
which might reflect improved sanitation and delayed initial exposure to
infectious agents, but we will not be able to be sure until we can
monitor on a statistically significant basis.
Again, I want to reiterate my strong support for the bill, and I urge
my colleagues to support it.
I yield back the balance of my time.
Mr. PALLONE. Mr. Speaker, I yield back the balance of my time.
The SPEAKER pro tempore. The question is on the motion offered by the
gentleman from New Jersey (Mr. Pallone) that the House suspend the
rules and pass the bill, H.R. 1362, as amended.
The question was taken; and (two-thirds being in the affirmative) the
rules were suspended and the bill, as amended, was passed.
A motion to reconsider was laid on the table.
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