Bill Overview
Title: CARE for Long COVID Act
Description: This bill requires multiple agencies to carry out research and other activities concerning individuals experiencing post-acute sequelae of COVID-19, or PASC, including health disparities related to this condition. PASC refers to persistent, long-term symptoms following recovery from acute COVID-19. First, the bill requires the Patient-Centered Outcomes Research Trust Fund to support a patient registry to collect information on the symptoms, treatments, demographics, and other relevant data of individuals with confirmed or suspected PASC. Second, the Department of Health and Human Services must, along with relevant agencies (1) conduct or support research on the U.S. health care system's response to long-term symptoms of COVID-19; and (2) develop resources about PASC or other post-viral illnesses, including about their potential impact on rights associated with employment, disability status, and education. Third, the Centers for Disease Control and Prevention must disseminate information about the common symptoms, treatment options, and other topics that pertain to PASC and related post-infectious illnesses. Fourth, the Centers for Medicare & Medicaid Services must expand its Chronic Conditions Data Warehouse to collect data on items and services furnished through Medicaid or the Children's Health Insurance Program to individuals who experience PASC. Last, the Administration for Community Living must award grants or contracts to states, health care providers, legal services providers, and other eligible entities for expanding access to legal assistance for individuals with PASC.
Sponsors: Sen. Kaine, Tim [D-VA]
Target Audience
Population: Individuals experiencing long-term effects of COVID-19 (Long COVID)
Estimated Size: 20000000
- PASC or Long COVID affects individuals who have recovered from the acute phase of COVID-19 but continue to experience symptoms.
- Studies suggest that a significant percentage of those who have had COVID-19 experience lingering symptoms, potentially up to 50% of those who had symptomatic COVID-19 at some point.
- As of 2023, there have been over 770 million confirmed COVID-19 cases globally, as per WHO.
- If we assume a lower estimate that 10% of global cases result in long COVID, this would be around 77 million people affected globally.
Reasoning
- This simulation considers a diverse cross-section of the U.S. population, with a focus on individuals who have experienced long COVID, but also includes those unaffected to represent the general public.
- The simulation assumes a population range of 10-30 million individuals experiencing long-term COVID-19 symptoms in the U.S., in line with estimates based on partial data for individuals affected by COVID-19 and the percentage experiencing ongoing symptoms.
- The chosen individuals vary in age, gender, occupation, and location to ensure diversity and a holistic view of policy impact, recognizing that experiences and the benefits of the policy will differ significantly.
- Given the budget constraints and scope of the policy, impact levels are varied from high to none, recognizing that certain individuals may not experience direct benefits, particularly if they have not been affected by COVID-19.
- Wellbeing scores are modeled to reflect individuals' adaptation to the policy over time, showing changes in scores if they benefit from legal, healthcare access, or resource distribution improvements through the policy.
Simulated Interviews
teacher (New York City, NY)
Age: 45 | Gender: female
Wellbeing Before Policy: 4
Duration of Impact: 5.0 years
Commonness: 8/20
Statement of Opinion:
- I hope this policy will improve understanding and management of my symptoms.
- Access to dedicated healthcare and legal support is crucial.
- Currently, dealing with long COVID alone is daunting.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 5 | 4 |
| Year 2 | 6 | 4 |
| Year 3 | 7 | 4 |
| Year 5 | 8 | 4 |
| Year 10 | 8 | 3 |
| Year 20 | 7 | 3 |
retired engineer (Houston, TX)
Age: 60 | Gender: male
Wellbeing Before Policy: 3
Duration of Impact: 10.0 years
Commonness: 5/20
Statement of Opinion:
- The policy could provide essential support; I feel hopeful.
- Information and healthcare access specific to long COVID would be a game-changer.
- Legal support to navigate disability claims is necessary.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 4 | 3 |
| Year 2 | 5 | 3 |
| Year 3 | 6 | 3 |
| Year 5 | 7 | 3 |
| Year 10 | 7 | 2 |
| Year 20 | 5 | 2 |
lawyer (Chicago, IL)
Age: 32 | Gender: female
Wellbeing Before Policy: 7
Duration of Impact: 0.0 years
Commonness: 15/20
Statement of Opinion:
- While I’m not personally affected, I see the value in supporting those with long COVID.
- The policy appears vital for understanding and addressing long-term COVID impacts.
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 | 7 | 7 |
| Year 20 | 7 | 7 |
healthcare worker (Los Angeles, CA)
Age: 28 | Gender: male
Wellbeing Before Policy: 5
Duration of Impact: 5.0 years
Commonness: 6/20
Statement of Opinion:
- An urgent need for clear treatment pathways and financial support for healthcare workers affected by long COVID.
- The registry and information dissemination are crucial for managing this condition effectively.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 5 |
| Year 2 | 7 | 5 |
| Year 3 | 7 | 4 |
| Year 5 | 8 | 4 |
| Year 10 | 8 | 4 |
| Year 20 | 6 | 4 |
college student (Portland, OR)
Age: 22 | Gender: other
Wellbeing Before Policy: 6
Duration of Impact: 3.0 years
Commonness: 7/20
Statement of Opinion:
- Access to information and educational accommodations could significantly help.
- More research will validate the struggles of young adults with long COVID.
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 | 7 | 5 |
| Year 20 | 6 | 4 |
small business owner (Atlanta, GA)
Age: 50 | Gender: male
Wellbeing Before Policy: 8
Duration of Impact: 2.0 years
Commonness: 12/20
Statement of Opinion:
- The policy doesn't directly affect me, but supporting employees with long COVID is important for my business.
- Clear guidelines on employment rights help manage workplace concerns.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 8 | 8 |
| Year 2 | 8 | 8 |
| Year 3 | 8 | 7 |
| Year 5 | 8 | 7 |
| Year 10 | 7 | 6 |
| Year 20 | 7 | 5 |
nurse (Detroit, MI)
Age: 39 | Gender: female
Wellbeing Before Policy: 4
Duration of Impact: 7.0 years
Commonness: 8/20
Statement of Opinion:
- The focus on healthcare responses and chronic conditions data is reassuring.
- Better resources will aid both personal recovery and professional understanding.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 5 | 4 |
| Year 2 | 6 | 4 |
| Year 3 | 7 | 4 |
| Year 5 | 8 | 3 |
| Year 10 | 8 | 3 |
| Year 20 | 7 | 3 |
software developer (Miami, FL)
Age: 55 | Gender: male
Wellbeing Before Policy: 5
Duration of Impact: 4.0 years
Commonness: 5/20
Statement of Opinion:
- Legal assistance and information on rights could greatly support.
- Understanding long COVID's impact on mental health is crucial.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 5 |
| Year 2 | 7 | 5 |
| Year 3 | 8 | 5 |
| Year 5 | 8 | 4 |
| Year 10 | 7 | 4 |
| Year 20 | 5 | 3 |
retired teacher (Seattle, WA)
Age: 70 | Gender: female
Wellbeing Before Policy: 4
Duration of Impact: 6.0 years
Commonness: 6/20
Statement of Opinion:
- Policy focus on senior access to information and healthcare is well overdue.
- Including educational resources for retirees is highly beneficial.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 5 | 4 |
| Year 2 | 6 | 4 |
| Year 3 | 7 | 3 |
| Year 5 | 8 | 3 |
| Year 10 | 7 | 2 |
| Year 20 | 6 | 2 |
construction worker (Salt Lake City, UT)
Age: 30 | Gender: male
Wellbeing Before Policy: 7
Duration of Impact: 1.0 years
Commonness: 10/20
Statement of Opinion:
- Not directly impacted, but aware of community struggles.
- Supporting affected workers ensures workplace safety and productivity.
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 | 6 |
| Year 10 | 6 | 6 |
| Year 20 | 6 | 5 |
Cost Estimates
Year 1: $250000000 (Low: $200000000, High: $300000000)
Year 2: $250000000 (Low: $200000000, High: $300000000)
Year 3: $260000000 (Low: $210000000, High: $310000000)
Year 5: $270000000 (Low: $220000000, High: $320000000)
Year 10: $300000000 (Low: $270000000, High: $330000000)
Year 100: $500000000 (Low: $450000000, High: $550000000)
Key Considerations
- The target population for this bill is large and potentially still growing as our understanding of PASC evolves.
- Coordination among multiple agencies will be crucial to the success of the initiative.
- The accurate collection and analysis of data will depend heavily on the existing healthcare infrastructure capabilities.