[Congressional Record (Bound Edition), Volume 156 (2010), Part 12]
[House]
[Pages 16943-16945]
[From the U.S. 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;

[[Page 16944]]

       ``(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.
       ``(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. VAN HOLLEN. Mr. Speaker, I am pleased to join my colleague, Rep. 
Michael Burgess, on this bipartisan legislation and I want to thank him 
for his leadership on this important issue. I also want to thank 
Chairman Waxman, Chairman Pallone, Ranking Member Barton, and Ranking 
Member Shimkus for their support.
  Our staffs have worked long and hard in a bipartisan manner to get to 
this point today. I

[[Page 16945]]

particularly want to recognize Ray Thorn on my staff, Anne Morris on 
the Committee staff, and JP Paluskeiwisc on Rep. Burgess' staff for 
their work on this legislation.
  While thousands of Americans are affected by Multiple Sclerosis, 
Parkinson's, or other neurological diseases, very little accurate 
information exists to assist those who research, treat, and provide 
care to those suffering from these diseases. Accurate incidence and 
prevalence information is critical and needed to gain a better 
understanding of these diseases. This lack of information inhibits 
research, treatments, programs, and services.
  In 2000, the Pew Environmental Health Commission, recommended that 
neurological diseases, such as Parkinson's and Multiple Sclerosis, be 
tracked by a national data system. Today, we take an important step 
implementing that recommendation by establishing a national 
neurological diseases surveillance system at CDC.
  Quite simply, the National Neurological Diseases Surveillance System 
Act will help improve and enhance the infrastructure in tracking the 
incidence and prevalence on neurological diseases, including Multiple 
Sclerosis and Parkinson's disease. The information collected through 
this surveillance system will provide a foundation for evaluating and 
understanding many factors such as geographic clusters of diagnosis, 
variances in the gender ratio, disease burden, and changes in health 
care practices.
  Mr. Speaker, this legislation represents an opportunity to move 
neurological disease research in a meaningful way that aims to improve 
the lives of all Americans suffering from Multiple Sclerosis, 
Parkinson's, or other neurological diseases.
  I urge my colleagues to support this bipartisan bill.
  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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