Bill Overview
Title: Cerebral Palsy Research Program Authorization Act of 2022
Description: This bill expands research activities related to cerebral palsy (a group of disorders caused by abnormal brain development or damage that affects an individual's ability to move and maintain balance and posture). Specifically, the Centers for Disease Control and Prevention must carry out a cerebral palsy research program that addresses diagnosis and treatment, public health surveillance, and related matters. Additionally, the National Institute of Neurological Disorders and Stroke and the Eunice Kennedy Shriver National Institute of Child Health and Human Development must update an existing strategic plan for cerebral palsy research.
Sponsors: Rep. Cohen, Steve [D-TN-9]
Target Audience
Population: Individuals with cerebral palsy
Estimated Size: 764000
- The legislation focuses on expanding research activities related to cerebral palsy, a condition that impacts movement and posture.
- Cerebral palsy affects children and adults worldwide, with an estimated global prevalence.
- Research shows around 17 million people globally live with cerebral palsy.
- The research program will impact individuals living with cerebral palsy by potentially improving diagnosis and treatment methods.
- Strategic plans for cerebral palsy research will have implications for global health systems, potentially influencing care protocols.
Reasoning
- The population targeted by this policy is relatively small in the United States, with an estimated 764,000 individuals affected by cerebral palsy.
- Given the $50 million USD budget for year 1, the funds must be distributed across research, public health surveillance, and potential updates to treatment protocols, likely impacting wellbeing through indirect improvements.
- The policy will primarily benefit those with cerebral palsy but may also indirectly affect caretakers, healthcare providers, and researchers involved in this field.
- It's essential to recognize that short-term impacts on wellbeing may be limited, as research findings take time to translate into clinical practice, thus longer-term projections may show more substantial benefits.
- The commonness of cerebral palsy impacts implies that the policy will not directly affect the broader population but will be significant for those within this group.
Simulated Interviews
Student (New York)
Age: 8 | Gender: male
Wellbeing Before Policy: 5
Duration of Impact: 10.0 years
Commonness: 12/20
Statement of Opinion:
- I hope this policy means my son will have access to better treatments in the future.
- Right now, our main concern is dealing with daily challenges.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 5 | 5 |
| Year 2 | 5 | 5 |
| Year 3 | 6 | 5 |
| Year 5 | 7 | 5 |
| Year 10 | 7 | 5 |
| Year 20 | 8 | 6 |
Researcher (California)
Age: 32 | Gender: female
Wellbeing Before Policy: 6
Duration of Impact: 20.0 years
Commonness: 5/20
Statement of Opinion:
- This funding is critical to advancing our understanding of cerebral palsy.
- I'm hopeful this policy will result in more collaborative and interdisciplinary research opportunities.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 6 |
| Year 2 | 7 | 6 |
| Year 3 | 7 | 6 |
| Year 5 | 8 | 6 |
| Year 10 | 8 | 6 |
| Year 20 | 9 | 6 |
Retired (Texas)
Age: 65 | Gender: male
Wellbeing Before Policy: 6
Duration of Impact: 5.0 years
Commonness: 10/20
Statement of Opinion:
- Policies like this give us hope that our granddaughter's future will be brighter.
- Healthcare costs and access are major concerns for us.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 6 |
| Year 2 | 6 | 6 |
| Year 3 | 6 | 6 |
| Year 5 | 7 | 6 |
| Year 10 | 7 | 7 |
| Year 20 | 7 | 6 |
Speech Therapist (Ohio)
Age: 42 | Gender: female
Wellbeing Before Policy: 7
Duration of Impact: 10.0 years
Commonness: 8/20
Statement of Opinion:
- Any new research can lead to better therapy techniques and outcomes for my clients.
- Funding must also focus on practical applications that reach every day practice settings.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 7 |
| Year 2 | 7 | 7 |
| Year 3 | 8 | 7 |
| Year 5 | 8 | 7 |
| Year 10 | 9 | 8 |
| Year 20 | 9 | 8 |
Advocate (Virginia)
Age: 28 | Gender: female
Wellbeing Before Policy: 6
Duration of Impact: 15.0 years
Commonness: 8/20
Statement of Opinion:
- I'm excited about increased awareness and research from this policy.
- Advocacy plays a critical role in ensuring these initiatives are effective.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 6 |
| Year 2 | 7 | 6 |
| Year 3 | 8 | 6 |
| Year 5 | 9 | 6 |
| Year 10 | 9 | 6 |
| Year 20 | 9 | 7 |
Healthcare Administrator (Illinois)
Age: 54 | Gender: male
Wellbeing Before Policy: 7
Duration of Impact: 10.0 years
Commonness: 6/20
Statement of Opinion:
- We hope to see more support for specialized care facilities through this initiative.
- Research informs how we can improve service delivery.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 7 |
| Year 2 | 7 | 7 |
| Year 3 | 8 | 7 |
| Year 5 | 8 | 7 |
| Year 10 | 9 | 8 |
| Year 20 | 9 | 8 |
Medical Research Coordinator (Florida)
Age: 39 | Gender: other
Wellbeing Before Policy: 7
Duration of Impact: 20.0 years
Commonness: 4/20
Statement of Opinion:
- More funding allows expansion of trials, which is crucial for development of treatments.
- Cerebral palsy research has long-needed more focused attention.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 7 |
| Year 2 | 7 | 7 |
| Year 3 | 8 | 7 |
| Year 5 | 8 | 7 |
| Year 10 | 9 | 8 |
| Year 20 | 10 | 8 |
College Student (Michigan)
Age: 21 | Gender: male
Wellbeing Before Policy: 6
Duration of Impact: 15.0 years
Commonness: 9/20
Statement of Opinion:
- I want to pursue a career that helps individuals like my sibling.
- The policy's research focus is motivating for future scientists like me.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 6 |
| Year 2 | 7 | 6 |
| Year 3 | 7 | 6 |
| Year 5 | 8 | 7 |
| Year 10 | 8 | 7 |
| Year 20 | 9 | 8 |
Pediatric Neurologist (Massachusetts)
Age: 45 | Gender: female
Wellbeing Before Policy: 8
Duration of Impact: 20.0 years
Commonness: 5/20
Statement of Opinion:
- It's crucial to translate new research into actionable clinical guidelines quickly.
- Better diagnostic tools will hopefully emerge from this policy.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 8 | 8 |
| Year 2 | 8 | 8 |
| Year 3 | 9 | 8 |
| Year 5 | 9 | 8 |
| Year 10 | 10 | 9 |
| Year 20 | 10 | 9 |
IT Professional (Minnesota)
Age: 30 | Gender: male
Wellbeing Before Policy: 8
Duration of Impact: 5.0 years
Commonness: 15/20
Statement of Opinion:
- Further research could improve assistive technologies important for individuals like myself.
- I believe there will also be more societal awareness programs.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 8 | 8 |
| Year 2 | 8 | 8 |
| Year 3 | 8 | 8 |
| Year 5 | 8 | 8 |
| Year 10 | 9 | 8 |
| Year 20 | 9 | 8 |
Cost Estimates
Year 1: $50000000 (Low: $45000000, High: $55000000)
Year 2: $51000000 (Low: $46000000, High: $56000000)
Year 3: $52000000 (Low: $47000000, High: $57000000)
Year 5: $54000000 (Low: $49000000, High: $59000000)
Year 10: $58000000 (Low: $53000000, High: $63000000)
Year 100: $100000000 (Low: $90000000, High: $110000000)
Key Considerations
- The uncertain scientific advancements in cerebral palsy research which could significantly alter costs.
- Potential infrastructure costs related to new technology and processes developed through the research.
- Unforeseen ethical, regulatory, or social challenges in deploying new research findings.
- Possible economies of scale if adopted internationally in collaboration with other countries.