Bill Overview
Title: Medicare Payment Reform for People with ALS Act of 2022
Description: This bill provides for specific Medicare coverage and payment of services for individuals with amyotrophic lateral sclerosis (ALS).
Sponsors: Rep. Schakowsky, Janice D. [D-IL-9]
Target Audience
Population: Individuals with amyotrophic lateral sclerosis (ALS)
Estimated Size: 30000
- ALS is a rare neurological disease that affects people worldwide.
- According to the ALS Association, approximately 5,000 people in the United States are diagnosed with ALS each year.
- ALS generally affects people between the ages of 40-70, with an average age of 55 at diagnosis.
- Globally, it is estimated that ALS affects 2 to 5 people per 100,000 annually.
- Considering the global population of approximately 8 billion, this would suggest a worldwide incidence of roughly 160,000 to 400,000 cases.
Reasoning
- The population affected by ALS is relatively small in the US, with approximately 30,000 individuals at any given time.
- Each year, around 5,000 new cases of ALS are diagnosed, which implies that the policy will need to provide coverage for both existing and new patients.
- The budget of $600 million in the first year allows for a significant amount of spending per individual, given a rough estimate of 30,000 people affected by ALS.
- With the average cost of healthcare expenditures for ALS patients being quite high due to prolonged and comprehensive care needs, this policy aims to reduce out-of-pocket expenses and increase access to necessary treatments.
- Given that ALS often leads to financial strain due to loss of income and high healthcare costs, the policy can have a high impact on financial well-being and subsequent wellbeing.
- Each interviewee simulation considers the different stages of ALS progression and financial circumstances, as well as geographical access to medical facilities.
- To understand the impact completely, we consider variations among ALS patients, such as age, stage of ALS, current financial health, and access to medical services.
Simulated Interviews
Retired teacher (New York, NY)
Age: 60 | Gender: female
Wellbeing Before Policy: 4
Duration of Impact: 10.0 years
Commonness: 3/20
Statement of Opinion:
- Having ALS is challenging not only physically but also financially.
- This policy would ease a lot of the burden, especially with in-home care costs.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 4 |
| Year 2 | 6 | 4 |
| Year 3 | 7 | 3 |
| Year 5 | 7 | 3 |
| Year 10 | 6 | 2 |
| Year 20 | 2 | 1 |
Software engineer (Austin, TX)
Age: 50 | Gender: male
Wellbeing Before Policy: 5
Duration of Impact: 5.0 years
Commonness: 4/20
Statement of Opinion:
- The coverage from Medicare would fill the gaps in what my insurance doesn't cover, helping us not exhaust our savings.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 4 |
| Year 2 | 6 | 4 |
| Year 3 | 6 | 3 |
| Year 5 | 5 | 3 |
| Year 10 | 3 | 2 |
| Year 20 | 1 | 1 |
Stay-at-home caregiver for elderly parent (Chicago, IL)
Age: 55 | Gender: female
Wellbeing Before Policy: 3
Duration of Impact: 10.0 years
Commonness: 2/20
Statement of Opinion:
- Without this financial support, maintaining care for myself and my parent would be impossible.
- This policy would significantly improve my quality of life.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 5 | 3 |
| Year 2 | 6 | 2 |
| Year 3 | 6 | 2 |
| Year 5 | 5 | 1 |
| Year 10 | 3 | 1 |
| Year 20 | 2 | 1 |
Retired cop (Miami, FL)
Age: 70 | Gender: male
Wellbeing Before Policy: 5
Duration of Impact: 5.0 years
Commonness: 2/20
Statement of Opinion:
- The bill would make treatments more affordable, allowing me to focus on living rather than medical financial issues.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 5 |
| Year 2 | 6 | 4 |
| Year 3 | 5 | 3 |
| Year 5 | 4 | 2 |
| Year 10 | 3 | 2 |
| Year 20 | 2 | 1 |
Gardener (Seattle, WA)
Age: 65 | Gender: female
Wellbeing Before Policy: 4
Duration of Impact: 7.0 years
Commonness: 3/20
Statement of Opinion:
- I've been managing, but barely. Medicare coverage changes would be a safety net for my continued treatments.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 5 | 4 |
| Year 2 | 5 | 3 |
| Year 3 | 5 | 3 |
| Year 5 | 4 | 2 |
| Year 10 | 3 | 1 |
| Year 20 | 2 | 1 |
Research scientist (Boston, MA)
Age: 45 | Gender: male
Wellbeing Before Policy: 6
Duration of Impact: 5.0 years
Commonness: 3/20
Statement of Opinion:
- As a researcher familiar with the medical field, this reform could ensure quicker adoption of newer treatments for ALS.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 6 |
| Year 2 | 7 | 5 |
| Year 3 | 6 | 4 |
| Year 5 | 5 | 3 |
| Year 10 | 4 | 2 |
| Year 20 | 2 | 1 |
Part-time librarian (Denver, CO)
Age: 62 | Gender: female
Wellbeing Before Policy: 4
Duration of Impact: 8.0 years
Commonness: 2/20
Statement of Opinion:
- The relief in medical expenses means more resources for other needed services like transportation.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 4 |
| Year 2 | 6 | 3 |
| Year 3 | 5 | 3 |
| Year 5 | 4 | 2 |
| Year 10 | 3 | 1 |
| Year 20 | 1 | 1 |
Freelance writer (Los Angeles, CA)
Age: 64 | Gender: male
Wellbeing Before Policy: 5
Duration of Impact: 7.0 years
Commonness: 3/20
Statement of Opinion:
- Support in covering health-related expenses would mean more stability in choosing when to work and when to rest.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 5 |
| Year 2 | 6 | 4 |
| Year 3 | 5 | 3 |
| Year 5 | 5 | 3 |
| Year 10 | 4 | 2 |
| Year 20 | 3 | 1 |
Manager at retail store (Atlanta, GA)
Age: 56 | Gender: female
Wellbeing Before Policy: 3
Duration of Impact: 10.0 years
Commonness: 2/20
Statement of Opinion:
- With my current expenses, any additional support would make a difference in my daily living quality.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 5 | 3 |
| Year 2 | 5 | 3 |
| Year 3 | 5 | 2 |
| Year 5 | 4 | 2 |
| Year 10 | 3 | 2 |
| Year 20 | 2 | 1 |
Artist (Portland, OR)
Age: 58 | Gender: male
Wellbeing Before Policy: 4
Duration of Impact: 7.0 years
Commonness: 3/20
Statement of Opinion:
- The Medicare reform could be pivotal in maintaining my currently stable but fragile state.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 5 | 4 |
| Year 2 | 5 | 3 |
| Year 3 | 4 | 3 |
| Year 5 | 4 | 2 |
| Year 10 | 3 | 1 |
| Year 20 | 2 | 1 |
Cost Estimates
Year 1: $600000000 (Low: $500000000, High: $700000000)
Year 2: $620000000 (Low: $520000000, High: $720000000)
Year 3: $640000000 (Low: $540000000, High: $740000000)
Year 5: $680000000 (Low: $580000000, High: $780000000)
Year 10: $760000000 (Low: $660000000, High: $860000000)
Year 100: $1500000000 (Low: $1200000000, High: $1800000000)
Key Considerations
- Prevalence and incidence of ALS in the U.S. and its economic implications for healthcare.
- Specific services covered by Medicare reform, which could impact the total cost.
- How ALS patient care requirements influence the estimates.