Department of the Interior, Environment, and Related Agencies Appropriations Act, 2018

Floor Speech

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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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