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: Rep. Tonko, Paul [D-NY-20]
Target Audience
Population: People worldwide with Parkinson's disease
Estimated Size: 1000000
- Parkinson's disease currently affects over 10 million people globally.
- In the United States, approximately 1 million people live with Parkinson's disease.
- The bill will impact not only those currently diagnosed with the disease but also those who may be diagnosed in the future.
- Improved diagnosis, treatment, and care will directly impact individuals with Parkinson's and indirectly benefit families, caregivers, healthcare professionals, and support organizations.
- The coordination of efforts and addressing disparities will likely improve outcomes and access to care across different regions and demographics.
Reasoning
- The Parkinson's patient population in the US is approximately 1 million, with about 60,000 new cases annually, indicating a significant health burden.
- Given the progressive nature of Parkinson's disease, improvements in treatment and care coordination should yield noticeable wellbeing improvements over time.
- The policy budget constraints mean that this program must efficiently allocate resources to have a meaningful impact.
- The policy aims to improve early diagnosis, treatment, and management strategies which can prevent severe decline if implemented effectively.
- Taking into account the family and caregivers, the policy could indirectly impact millions more, offering some relief and support.
Simulated Interviews
retired electrical engineer (Florida)
Age: 68 | Gender: male
Wellbeing Before Policy: 4
Duration of Impact: 15.0 years
Commonness: 4/20
Statement of Opinion:
- I used to be active, and this disease has robbed me of so much.
- If they can improve the treatments and slow the progression, that would be life-changing for me.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 5 | 4 |
| Year 2 | 6 | 4 |
| Year 3 | 6 | 3 |
| Year 5 | 7 | 3 |
| Year 10 | 8 | 2 |
| Year 20 | 8 | 1 |
software developer (California)
Age: 45 | Gender: female
Wellbeing Before Policy: 5
Duration of Impact: 10.0 years
Commonness: 10/20
Statement of Opinion:
- My father struggles with basic tasks, and it's hard to watch.
- More support for families would definitely help relieve some burden.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 5 |
| Year 2 | 6 | 5 |
| Year 3 | 6 | 5 |
| Year 5 | 7 | 5 |
| Year 10 | 7 | 5 |
| Year 20 | 7 | 5 |
retired teacher (New York)
Age: 72 | Gender: male
Wellbeing Before Policy: 6
Duration of Impact: 10.0 years
Commonness: 8/20
Statement of Opinion:
- I've seen how it impacts many families.
- This policy feels like a step towards real support and maybe hope.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 6 |
| Year 2 | 7 | 6 |
| Year 3 | 7 | 5 |
| Year 5 | 7 | 5 |
| Year 10 | 8 | 4 |
| Year 20 | 8 | 3 |
retired (Texas)
Age: 83 | Gender: female
Wellbeing Before Policy: 3
Duration of Impact: 5.0 years
Commonness: 5/20
Statement of Opinion:
- For years, I've fought for more awareness and better care.
- It's encouraging to see a national focus; we need this.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 3 | 3 |
| Year 2 | 4 | 3 |
| Year 3 | 4 | 3 |
| Year 5 | 5 | 3 |
| Year 10 | 5 | 3 |
| Year 20 | 5 | 3 |
neurologist (Illinois)
Age: 30 | Gender: female
Wellbeing Before Policy: 7
Duration of Impact: 20.0 years
Commonness: 15/20
Statement of Opinion:
- This could revolutionize how we approach treatment.
- The potential to improve early diagnosis especially excites me.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 7 |
| Year 2 | 8 | 7 |
| Year 3 | 8 | 7 |
| Year 5 | 8 | 7 |
| Year 10 | 9 | 7 |
| Year 20 | 9 | 7 |
mechanic (Ohio)
Age: 56 | Gender: male
Wellbeing Before Policy: 4
Duration of Impact: 15.0 years
Commonness: 7/20
Statement of Opinion:
- Hearing about this policy gives me hope for a better treatment soon.
- I worry about my job, but improved treatment could keep me working longer.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 5 | 4 |
| Year 2 | 5 | 4 |
| Year 3 | 6 | 3 |
| Year 5 | 7 | 3 |
| Year 10 | 8 | 2 |
| Year 20 | 8 | 1 |
retired librarian (Michigan)
Age: 65 | Gender: female
Wellbeing Before Policy: 5
Duration of Impact: 10.0 years
Commonness: 6/20
Statement of Opinion:
- Anything that improves daily life quality is worth trying.
- I’ve been managing okay, but newer therapies are much needed.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 5 | 5 |
| Year 2 | 6 | 5 |
| Year 3 | 6 | 4 |
| Year 5 | 6 | 4 |
| Year 10 | 7 | 3 |
| Year 20 | 7 | 2 |
author (Washington)
Age: 38 | Gender: other
Wellbeing Before Policy: 6
Duration of Impact: 5.0 years
Commonness: 9/20
Statement of Opinion:
- More investment means more awareness and stories to tell.
- Better policies could inspire my work and others'.
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 | 7 | 6 |
| Year 10 | 7 | 6 |
| Year 20 | 7 | 6 |
retired (Georgia)
Age: 77 | Gender: male
Wellbeing Before Policy: 4
Duration of Impact: 10.0 years
Commonness: 5/20
Statement of Opinion:
- The policy needs to enhance care facilities and access.
- Participating in trials, I see the bright future possible with more funding.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 5 | 4 |
| Year 2 | 5 | 4 |
| Year 3 | 6 | 4 |
| Year 5 | 6 | 3 |
| Year 10 | 7 | 3 |
| Year 20 | 8 | 2 |
nurse (New Jersey)
Age: 50 | Gender: female
Wellbeing Before Policy: 7
Duration of Impact: 20.0 years
Commonness: 12/20
Statement of Opinion:
- I hope this national effort will streamline resources in hospitals.
- Better management guidelines could enhance patient care outcomes.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 7 |
| Year 2 | 8 | 7 |
| Year 3 | 9 | 7 |
| Year 5 | 9 | 7 |
| Year 10 | 9 | 7 |
| Year 20 | 9 | 7 |
Cost Estimates
Year 1: $500000000 (Low: $400000000, High: $600000000)
Year 2: $520000000 (Low: $420000000, High: $620000000)
Year 3: $540000000 (Low: $440000000, High: $640000000)
Year 5: $580000000 (Low: $480000000, High: $680000000)
Year 10: $660000000 (Low: $560000000, High: $760000000)
Year 100: $0 (Low: $0, High: $0)
Key Considerations
- The longevity and sustainability of national health plans should be ensured to maintain consistent healthcare improvements.
- Balancing initial implementation costs with anticipated long-term healthcare savings is crucial.
- Stakeholder coordination, including federal and nonfederal parties, will impact the project's efficiency and effectiveness.
- Ensuring adequate funding and preventing potential financial shortfalls during the project's duration is of high importance.