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: Sen. Van Hollen, Chris [D-MD]
Target Audience
Population: People with sickle cell disease or sickle cell trait
Estimated Size: 3000000
- Sickle cell disease (SCD) affects millions of people worldwide, especially those of African descent.
- Approximately 300,000 children are born with sickle cell disease each year globally, with a significant portion in sub-Saharan Africa.
- Individuals with sickle cell trait (not necessarily the disease) may also require monitoring, impacting millions more.
- The establishment of treatment centers could potentially impact all individuals diagnosed with SCD or carrying the trait by improving access to healthcare.
Reasoning
- Sickle cell disease predominantly affects African American populations in the U.S., but awareness and available treatment options historically have been limited, leading to significant unmet healthcare needs.
- The policy aims to create and improve access to comprehensive care networks for those affected by sickle cell disease and sickle cell trait through dedicated centers.
- Interviews were simulated with individuals likely experiencing varying levels of impact based on whether they currently have the disease, carry the trait, or are unimpacted directly but part of the affected community.
Simulated Interviews
Graduate student (Atlanta, Georgia)
Age: 25 | Gender: female
Wellbeing Before Policy: 4
Duration of Impact: 20.0 years
Commonness: 10/20
Statement of Opinion:
- I often struggle to find specialists who understand my condition.
- Improved access to care would mean fewer emergency room visits and more consistent management.
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 | 9 | 3 |
| Year 20 | 9 | 3 |
Healthcare worker (Jackson, Mississippi)
Age: 35 | Gender: male
Wellbeing Before Policy: 6
Duration of Impact: 10.0 years
Commonness: 15/20
Statement of Opinion:
- I didn't know much about the trait; more awareness would help me make informed health decisions.
- Having a treatment center nearby could provide beneficial educational resources.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 6 |
| Year 2 | 7 | 6 |
| Year 3 | 7 | 6 |
| Year 5 | 7 | 6 |
| Year 10 | 8 | 6 |
| Year 20 | 8 | 6 |
Unemployed (Chicago, Illinois)
Age: 45 | Gender: female
Wellbeing Before Policy: 3
Duration of Impact: 20.0 years
Commonness: 7/20
Statement of Opinion:
- Chronic pain and frequent hospital visits are my reality.
- Access to a holistic care center would significantly improve my quality of life.
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 | 8 | 3 |
| Year 20 | 8 | 2 |
Retail manager (New York City, New York)
Age: 55 | Gender: male
Wellbeing Before Policy: 5
Duration of Impact: 5.0 years
Commonness: 12/20
Statement of Opinion:
- I want to ensure my children understand the potential health complications of inheriting this trait.
- Centers would provide necessary screening and information.
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 | 6 | 5 |
| Year 10 | 6 | 5 |
| Year 20 | 6 | 5 |
Software engineer (Houston, Texas)
Age: 30 | Gender: female
Wellbeing Before Policy: 6
Duration of Impact: 10.0 years
Commonness: 14/20
Statement of Opinion:
- Seeing my sibling suffer without adequate care is heart-wrenching.
- I support the establishment of these centers to offer much-needed support.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 6 |
| Year 2 | 7 | 6 |
| Year 3 | 7 | 6 |
| Year 5 | 7 | 6 |
| Year 10 | 8 | 6 |
| Year 20 | 8 | 6 |
Retired (Los Angeles, California)
Age: 60 | Gender: male
Wellbeing Before Policy: 7
Duration of Impact: 10.0 years
Commonness: 9/20
Statement of Opinion:
- My work with the support group highlights the need for dedicated care centers.
- I'm concerned about increasing support for future generations.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 8 | 7 |
| Year 2 | 8 | 7 |
| Year 3 | 8 | 7 |
| Year 5 | 8 | 7 |
| Year 10 | 9 | 7 |
| Year 20 | 9 | 7 |
College student (Baltimore, Maryland)
Age: 20 | Gender: male
Wellbeing Before Policy: 5
Duration of Impact: 20.0 years
Commonness: 4/20
Statement of Opinion:
- Accessibility to a center would drastically change my healthcare experience.
- I'm active in advocacy and would benefit from these organized networks.
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 | 9 | 5 |
| Year 10 | 10 | 5 |
| Year 20 | 10 | 4 |
Teacher (Philadelphia, Pennsylvania)
Age: 40 | Gender: female
Wellbeing Before Policy: 4
Duration of Impact: 20.0 years
Commonness: 8/20
Statement of Opinion:
- Reliable treatment centers would help manage my condition better.
- My current healthcare access is inconsistent and problematic.
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 | 9 | 4 |
| Year 20 | 9 | 3 |
Community organizer (Miami, Florida)
Age: 50 | Gender: other
Wellbeing Before Policy: 6
Duration of Impact: 10.0 years
Commonness: 11/20
Statement of Opinion:
- I support the initiative for its potential community impact.
- Health centers are essential for providing equitable healthcare access.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 6 |
| Year 2 | 7 | 6 |
| Year 3 | 7 | 6 |
| Year 5 | 7 | 6 |
| Year 10 | 8 | 6 |
| Year 20 | 8 | 6 |
Mechanic (Detroit, Michigan)
Age: 28 | Gender: male
Wellbeing Before Policy: 5
Duration of Impact: 10.0 years
Commonness: 13/20
Statement of Opinion:
- I worry about my mom's condition and lack of specialized care.
- Better local health infrastructure is greatly needed.
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 | 8 | 5 |
| Year 20 | 8 | 5 |
Cost Estimates
Year 1: $350000000 (Low: $300000000, High: $400000000)
Year 2: $300000000 (Low: $250000000, High: $350000000)
Year 3: $300000000 (Low: $250000000, High: $350000000)
Year 5: $0 (Low: $0, High: $0)
Year 10: $0 (Low: $0, High: $0)
Year 100: $0 (Low: $0, High: $0)
Key Considerations
- The establishment of these treatment centers will require substantial upfront investments and management.
- Coordination and collaboration among various healthcare organizations are critical for the success of the hub-and-spoke model.
- There is a potential for significant healthcare savings, but these would be realized only if the program effectively reduces healthcare utilization such as emergency room visits.
- Public awareness and educational components are crucial for the success of outreach to individuals with sickle cell trait, who are less likely to have visible symptoms.