Bill Overview
Title: National Plan to End Parkinson’s Act
Description: This bill requires the Department of Health and Human Services (HHS) to carry out a project to prevent and cure Parkinson's disease (a progressive brain disorder that causes unintended or uncontrollable movements) and related conditions. Among other components of the project, HHS must (1) implement and periodically update a national plan to coordinate and guide efforts to prevent and cure the disease; (2) improve diagnosis, treatment, and care of those with the disease; and (3) address health and other disparities related to the disease. HHS must also conduct annual assessments on the preparation for and response to the increased burden of Parkinson's disease. In addition, the bill establishes a council, comprised of federal and nonfederal stakeholders, to advise HHS on and make recommendations concerning the prevention and cure of Parkinson's disease. The bill's provisions terminate at the end of calendar year 2035.
Sponsors: Sen. Capito, Shelley Moore [R-WV]
Target Audience
Population: People diagnosed with or at risk of Parkinson's disease globally
Estimated Size: 1000000
- Parkinson's disease affects approximately 1% of the population over the age of 60 globally.
- The global population over 60 is estimated to be around 1 billion people as of 2023.
- Assuming a consistent rate, approximately 10 million people worldwide are directly affected by Parkinson's disease.
- The proposed bill is targeted toward both preventing and curing Parkinson's disease, which could have an impact on those currently diagnosed and those at risk.
- Indirect beneficiaries include families, caregivers, and healthcare systems dealing with Parkinson's disease.
- Given potential global research and coordination efforts, the benefits might extend to patients worldwide as well.
Reasoning
- Parkinson's disease affects approximately 1% of the population over the age of 60 globally, and in the US, about 60,000 people are diagnosed with it each year.
- With this policy targeting improvement in prevention, treatment, and care, it should directly impact these individuals, as well as potential future patients and their families.
- There are significant differences in how early or advanced stages of the illness could affect an individual's well-being, potentially impacting their self-reported Cantril Wellbeing scores.
- Given the diverse demographic distribution in the US, the population impacted by the policy will likely vary by age, gender, lifestyle, and access to healthcare resources.
- The policy's budget limitations mean that initially, direct impacts could be more concentrated amongst those with severe symptoms, or in trials and research data collection.
- The creation of a council and ongoing assessment may bolster the policy's effectiveness over time, particularly with consistent updates in plan and improved coordination among stakeholders.
Simulated Interviews
retired software engineer (San Francisco, CA)
Age: 67 | Gender: male
Wellbeing Before Policy: 5
Duration of Impact: 12.0 years
Commonness: 8/20
Statement of Opinion:
- I'm hopeful that the policy will bring more research and possibly a cure or at least better management options soon.
- I wish the policy had come sooner, but better late than never.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 5 |
| Year 2 | 7 | 5 |
| Year 3 | 7 | 5 |
| Year 5 | 8 | 5 |
| Year 10 | 9 | 4 |
| Year 20 | 9 | 3 |
retired teacher (Miami, FL)
Age: 72 | Gender: female
Wellbeing Before Policy: 4
Duration of Impact: 10.0 years
Commonness: 6/20
Statement of Opinion:
- The policy gives me hope for more support services and potentially better therapies for my husband.
- It can't come soon enough for us.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 5 | 4 |
| Year 2 | 6 | 4 |
| Year 3 | 6 | 4 |
| Year 5 | 6 | 3 |
| Year 10 | 7 | 2 |
| Year 20 | 5 | 2 |
accountant (New York, NY)
Age: 55 | Gender: male
Wellbeing Before Policy: 7
Duration of Impact: 20.0 years
Commonness: 10/20
Statement of Opinion:
- Having this policy in place makes me feel more secure about the future.
- I think it's a necessary step towards preventing other people from experiencing what my father did.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 7 |
| Year 2 | 7 | 7 |
| Year 3 | 7 | 7 |
| Year 5 | 7 | 7 |
| Year 10 | 8 | 7 |
| Year 20 | 8 | 6 |
scientific researcher (Denver, CO)
Age: 39 | Gender: female
Wellbeing Before Policy: 8
Duration of Impact: 10.0 years
Commonness: 5/20
Statement of Opinion:
- This policy is crucial for advancing research and hopefully finding a cure.
- It will provide much-needed funds and coordination for comprehensive studies.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 8 | 8 |
| Year 2 | 9 | 8 |
| Year 3 | 9 | 8 |
| Year 5 | 10 | 8 |
| Year 10 | 9 | 8 |
| Year 20 | 8 | 7 |
healthcare administrator (Chicago, IL)
Age: 48 | Gender: male
Wellbeing Before Policy: 6
Duration of Impact: 15.0 years
Commonness: 8/20
Statement of Opinion:
- Implementation will streamline processes and provide clearer directives for care.
- I'm optimistic about the potential for reducing patient load through better treatments.
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 | 8 | 6 |
| Year 10 | 9 | 5 |
| Year 20 | 9 | 5 |
retired lawyer (Seattle, WA)
Age: 83 | Gender: female
Wellbeing Before Policy: 6
Duration of Impact: 10.0 years
Commonness: 3/20
Statement of Opinion:
- The policy is a positive step towards real change in dealing with Parkinson's.
- More coordination and support might help others like me maintain quality of life longer.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 6 |
| Year 2 | 8 | 6 |
| Year 3 | 8 | 5 |
| Year 5 | 9 | 4 |
| Year 10 | 8 | 3 |
| Year 20 | 6 | 2 |
engineer (Austin, TX)
Age: 64 | Gender: male
Wellbeing Before Policy: 5
Duration of Impact: 15.0 years
Commonness: 7/20
Statement of Opinion:
- It's relieving to see attention towards preventive measures in the policy.
- I'd like to see more educational resources as part of this initiative.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 5 |
| Year 2 | 6 | 5 |
| Year 3 | 7 | 5 |
| Year 5 | 7 | 5 |
| Year 10 | 7 | 5 |
| Year 20 | 7 | 4 |
nurse (Boston, MA)
Age: 58 | Gender: female
Wellbeing Before Policy: 6
Duration of Impact: 20.0 years
Commonness: 9/20
Statement of Opinion:
- Improved protocols and coordination through this policy will significantly impact treatment quality.
- I believe it will eventually ease the burden on healthcare professionals as well.
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 | 8 | 5 |
| Year 10 | 9 | 5 |
| Year 20 | 9 | 4 |
retired military officer (Phoenix, AZ)
Age: 61 | Gender: male
Wellbeing Before Policy: 5
Duration of Impact: 15.0 years
Commonness: 4/20
Statement of Opinion:
- This policy could mean more independence and potentially lessening the progression rate for people like me.
- I believe it might also provide more options for living arrangements and support.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 5 |
| Year 2 | 6 | 5 |
| Year 3 | 7 | 4 |
| Year 5 | 8 | 4 |
| Year 10 | 8 | 3 |
| Year 20 | 7 | 3 |
retired nurse (Dallas, TX)
Age: 71 | Gender: female
Wellbeing Before Policy: 5
Duration of Impact: 10.0 years
Commonness: 6/20
Statement of Opinion:
- I'm hopeful that this policy will lead to breakthroughs that could enhance quality of life.
- I think we need more outreach and education to accompany the scientific push.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 5 |
| Year 2 | 7 | 5 |
| Year 3 | 7 | 5 |
| Year 5 | 8 | 5 |
| Year 10 | 9 | 4 |
| Year 20 | 8 | 3 |
Cost Estimates
Year 1: $750000000 (Low: $600000000, High: $900000000)
Year 2: $800000000 (Low: $650000000, High: $950000000)
Year 3: $850000000 (Low: $700000000, High: $1000000000)
Year 5: $900000000 (Low: $750000000, High: $1050000000)
Year 10: $950000000 (Low: $800000000, High: $1100000000)
Year 100: $0 (Low: $0, High: $0)
Key Considerations
- The duration of funding and program activities is until 2035, which specifies a 12-year active period.
- Investment in Parkinson's research may yield scientific and healthcare breakthroughs beyond the scope of this program.
- Coordination with international efforts could amplify the potential impact and possibly leverage additional funding sources.
- The variability in disease progression and treatment efficacy makes precise cost and savings estimates challenging.