[Congressional Record Volume 163, Number 144 (Thursday, September 7, 2017)]
[Extensions of Remarks]
[Page E1173]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]





     DEPARTMENT OF THE INTERIOR, ENVIRONMENT, AND RELATED AGENCIES 
                        APPROPRIATIONS ACT, 2018

                                 ______
                                 

                               speech of

                         HON. GUS M. BILIRAKIS

                               of florida

                    in the house of representatives

                      Wednesday, September 6, 2017

       The House in Committee of the Whole House on the state of 
     the Union had under consideration the bill (H.R. 3354) making 
     appropriations for the Department of the Interior, 
     environment, and related agencies for the fiscal year ending 
     September 30, 2018, and for other purposes:

  Mr. BILIRAKIS. Mr. Chair, as the co-chair of the Congressional Caucus 
on Parkinson's Disease and a member of the Congressional Multiple 
Sclerosis Caucus, I'm proud of the collective work of the 114th 
Congress in enacting 21st Century Cures--a bipartisan undertaking to 
help our healthcare innovation infrastructure thrive and deliver more 
hope for all patients.
  Personally, I have family members who have suffered with 
Parkinson's--I witness this debilitating disease through them. It's 
hard to watch. Few things in America are truly universal--diseases, 
sadly, are one of those things.
  Currently, we do not have accurate information about how many people 
are living with neurological diseases like Parkinson's and Multiple 
Sclerosis, geographic location, or even basic attributes like gender, 
ethnicity, etc. Lack of accurate information slows critical research 
while erecting new and reinforcing existing barriers to health care 
services that these vulnerable patients need.
  21st Century Cures addressed this issue by statutorily developing the 
necessary infrastructure to collect data on neurological diseases so 
key health stakeholders could better understand the patient population, 
facilitate research, and proactively plan for health care needs--saving 
lives while controlling costs. This infrastructure is the National 
Neurological Conditions Surveillance System.
  Information provided by the National Neurological Conditions 
Surveillance System will provide a foundation for understanding 
factors, such as clusters of diagnoses in certain geographic regions, 
variances in the number of men and women diagnosed with neurological 
diseases, and differences in health care practices among patients. 
Unfortunately, funds were not appropriated to formally establish this 
database at CDC.
  Mr. Chair, I understand that we must practice fiscal discipline and 
exercise fiscal constraint. I understand difficult decisions must be 
made in this appropriation bill. I understand the fiscal environment in 
which we now find ourselves due to our low budget caps here in the 
House. However, as the budget caps are higher in the Senate, I ask that 
should the measure we are considering be put before a conference 
committee, that funding be made available for the National Neurological 
Conditions Surveillance System so that we can realize the mission of 
21st Century Cures--to accelerate medical product development and bring 
new innovations and advances to patients who need them faster and more 
efficiently. I hope you will work with me to find funding for this 
critical system for patients.

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