Bill Overview
Title: Sickle Cell Disease Treatment Centers Act of 2022
Description: This bill directs the Department of Health and Human Services to award grants for establishing sickle cell disease treatment centers that operate using a hub-and-spoke framework to provide integrated, longitudinal health care for patients with the disease and individuals with sickle cell trait. Grant recipients must be networks comprised of (1) a hospital, clinic, or university health center; (2) at least one federally qualified health center or other health care organization that incorporates community health workers into the care team; and (3) at least one community-based organization. Sickle cell disease is an inherited blood disorder that can lead to pain, anemia, infections, and stroke.
Sponsors: Rep. Lee, Barbara [D-CA-13]
Target Audience
Population: Individuals affected by sickle cell disease or carrying the sickle cell trait
Estimated Size: 2100000
- The bill aims to establish treatment centers specifically for sickle cell disease (SCD) patients, suggesting that the primary impact is on individuals diagnosed with this condition.
- Sickle cell disease is a genetic condition affecting millions globally, but it is particularly prevalent among people of African, Hispanic, Mediterranean, and South Asian descent.
- The bill includes individuals with sickle cell trait in the scope, expanding the impact to those who carry the trait without having full-blown SCD.
- Global estimates for sickle cell disease are around 300,000 children born with the condition annually, with a significant concentration in Sub-Saharan Africa.
- The population impacted also includes healthcare providers and community health organizations, who will be involved in the implementation of these treatment centers.
Reasoning
- The Sickle Cell Disease Treatment Centers Act of 2022 focuses on individuals affected by sickle cell disease or traits, primarily African American communities in the U.S. due to genetic predispositions.
- The policy's implementation will directly benefit patients with sickle cell disease by providing better access to comprehensive healthcare via specialized centers, potentially improving the quality of life and healthcare outcomes.
- There is a limited budget and scope, suggesting that not all individuals in need may see immediate benefits, but over time, distributed resources could enhance the system for broader community benefits.
- The simulation should include a diverse range of individuals, from directly affected patients to healthcare workers, and even those with no impact to provide a broad view of societal implications.
- We account for varying perspectives, such as those skeptical about governmental policy effectiveness and those hopeful for systemic healthcare improvements.
- To model a realistic population, the simulation includes individuals with varied ethnic backgrounds and living in both urban and rural areas, considering access disparities.
Simulated Interviews
Software Developer (Chicago, IL)
Age: 32 | Gender: male
Wellbeing Before Policy: 4
Duration of Impact: 10.0 years
Commonness: 5/20
Statement of Opinion:
- I have faced many challenges getting consistent and comprehensive care for my condition.
- This policy could finally provide the structured healthcare services people like me need.
- Access to a network of providers might reduce emergency visits, which are frequent and disruptive.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 5 | 4 |
| Year 2 | 6 | 4 |
| Year 3 | 7 | 5 |
| Year 5 | 8 | 5 |
| Year 10 | 9 | 5 |
| Year 20 | 9 | 4 |
Nurse (Houston, TX)
Age: 45 | Gender: female
Wellbeing Before Policy: 7
Duration of Impact: 10.0 years
Commonness: 4/20
Statement of Opinion:
- I see many patients struggle with the unique challenges of sickle cell disease.
- A coordinated care network will help to manage patient issues proactively.
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 | 8 | 7 |
| Year 20 | 9 | 7 |
Marketing Executive (Los Angeles, CA)
Age: 28 | Gender: female
Wellbeing Before Policy: 8
Duration of Impact: 5.0 years
Commonness: 6/20
Statement of Opinion:
- I don't currently face health issues due to the trait, but I'm wary for future implications for my children.
- Education and outreach from the centers could be beneficial for family planning.
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 | 9 | 8 |
| Year 10 | 9 | 8 |
| Year 20 | 9 | 8 |
Retired (Atlanta, GA)
Age: 67 | Gender: male
Wellbeing Before Policy: 6
Duration of Impact: 10.0 years
Commonness: 3/20
Statement of Opinion:
- I've witnessed the struggles my granddaughter goes through with sickle cell disease.
- This act could lay a solid foundation for better long-term care for her.
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 | 9 | 7 |
| Year 20 | 9 | 7 |
Community Organizer (New York, NY)
Age: 36 | Gender: female
Wellbeing Before Policy: 7
Duration of Impact: 5.0 years
Commonness: 2/20
Statement of Opinion:
- It's a step in the right direction for equitable healthcare access.
- Such policies need strong community engagement to be truly effective.
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 | 8 | 7 |
| Year 20 | 8 | 7 |
Primary Care Physician (Phoenix, AZ)
Age: 55 | Gender: male
Wellbeing Before Policy: 6
Duration of Impact: 10.0 years
Commonness: 4/20
Statement of Opinion:
- This policy could integrate specialists more effectively into routine care, improving patient outcomes.
- It's an opportunity to educate and manage SCD better within primary care settings.
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 | 7 |
| Year 20 | 8 | 7 |
Social Worker (Miami, FL)
Age: 60 | Gender: female
Wellbeing Before Policy: 7
Duration of Impact: 15.0 years
Commonness: 3/20
Statement of Opinion:
- Integrating healthcare services can help bridge gaps in the social determinants of health.
- SCD patients face so many challenges; this could really make a difference for quality of care.
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 | 9 | 7 |
| Year 10 | 9 | 7 |
| Year 20 | 9 | 7 |
Farmer (Rural Mississippi)
Age: 40 | Gender: male
Wellbeing Before Policy: 5
Duration of Impact: 2.0 years
Commonness: 7/20
Statement of Opinion:
- I rarely think about my trait since it doesn't affect me directly, but building awareness is important.
- Rural areas need more access to comprehensive information and care.
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 | 6 | 5 |
| Year 10 | 7 | 5 |
| Year 20 | 7 | 5 |
Pharmacy Technician (Seattle, WA)
Age: 25 | Gender: female
Wellbeing Before Policy: 6
Duration of Impact: 7.0 years
Commonness: 5/20
Statement of Opinion:
- With relatives who have sickle cell trait, I'm invested in community education efforts.
- The focus on integration means more resources could reach minorities within my community.
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 | 8 | 6 |
Teacher (Boise, ID)
Age: 50 | Gender: other
Wellbeing Before Policy: 8
Duration of Impact: 0.0 years
Commonness: 10/20
Statement of Opinion:
- As a general member of the community, I don't feel directly concerned by this policy, but healthcare improvements are always beneficial.
- Sickle cell might not be prevalent in this area, but this act seems like it addresses crucial healthcare gaps elsewhere.
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 | 8 | 8 |
| Year 20 | 8 | 8 |
Cost Estimates
Year 1: $200000000 (Low: $150000000, High: $250000000)
Year 2: $180000000 (Low: $130000000, High: $230000000)
Year 3: $175000000 (Low: $125000000, High: $225000000)
Year 5: $170000000 (Low: $120000000, High: $220000000)
Year 10: $0 (Low: $0, High: $0)
Year 100: $0 (Low: $0, High: $0)
Key Considerations
- Ensuring equitable access to the centers, especially for underserved populations.
- Infrastructure costs in rural versus urban areas and how these impact grant allocations.
- Potential overlap and integration with existing healthcare initiatives.