Bill Overview
Title: Sickle Cell Care Expansion Act of 2022
Description: This bill establishes programs to increase treatment and other services for populations with sickle cell disease. Sickle cell disease is an inherited blood disorder that can lead to pain, anemia, infections, and stroke. Specifically, the Department of Health and Human Services (HHS) must award grants to federally qualified health centers, community-based organizations, or other nonprofits that treat or otherwise support populations with sickle cell disease for education and advocacy programs concerning the disease. HHS must also award grants to nonprofits, including hospitals or institutions of higher education, that provide comprehensive care to populations with sickle cell disease for programs to support the transition from pediatric to adult care for patients with the disease. Additionally, the Health Resources and Services Administration must establish a program to provide scholarships or student loan repayment awards to individuals who commit to engage in clinical practice or research related to sickle cell disease for a period of obligated service as physicians.
Sponsors: Sen. Van Hollen, Chris [D-MD]
Target Audience
Population: Individuals with sickle cell disease
Estimated Size: 100000
- Sickle cell disease primarily affects at-risk populations who have inherited the disorder genetically.
- Populations at highest risk are those with ancestry from sub-Saharan Africa, India, Saudi Arabia, and Mediterranean countries, where the sickle cell trait is more prevalent.
- According to the World Health Organization, approximately 300,000 infants are born with sickle cell anemia annually worldwide.
- The prevalence is high among African American and Latino populations in the United States.
- In the U.S., around 100,000 people are affected by sickle cell disease.
- Globally, millions are impacted as carriers of the sickle cell trait or having the disease.
Reasoning
- The policy targets individuals with sickle cell disease, primarily impacting African American and Hispanic American communities, particularly those with Caribbean or South American ancestries.
- The budget constraints mean that while significant, the policy cannot cover every individual with sickle cell disease, necessitating targeted distribution of resources.
- The policy includes education, healthcare transition support, and professional incentives to encourage long-term improvements in care quality and accessibility.
- The policy aims to address well-being in a holistic manner, aiming to support affected individuals through medical, educational, and socio-economic support.
- Combining grants to organizations and scholarships to medical practitioners ensures a pipeline of knowledgeable professionals who can offer specialized care.
- While positive impacts are anticipated, the scale and reach will vary depending on geographic and demographic factors, as some areas may benefit more immediately than others.
Simulated Interviews
Nurse (Chicago, IL)
Age: 32 | Gender: female
Wellbeing Before Policy: 5
Duration of Impact: 10.0 years
Commonness: 8/20
Statement of Opinion:
- The new policy gives me hope that my siblings and people in our community will have better access to specialized services.
- Continuity from pediatric to adult care is crucial and often neglected. This focus will be a game-changer for many.
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 | 9 | 3 |
| Year 20 | 9 | 3 |
Advocate (Atlanta, GA)
Age: 45 | Gender: male
Wellbeing Before Policy: 5
Duration of Impact: 10.0 years
Commonness: 9/20
Statement of Opinion:
- This investment is a critical step in the right direction for our community, but it needs to be sustained and expanded over time.
- Access to quality healthcare and those trained to manage sickle cell is essential for our children's futures.
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 | 4 |
| Year 10 | 8 | 4 |
| Year 20 | 8 | 3 |
Graduate Student in Biomedical Sciences (Los Angeles, CA)
Age: 28 | Gender: other
Wellbeing Before Policy: 7
Duration of Impact: 5.0 years
Commonness: 4/20
Statement of Opinion:
- The policy is a positive step for both patients and researchers.
- Increased funding could advance research and improve treatment options.
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 |
College Student (Miami, FL)
Age: 22 | Gender: female
Wellbeing Before Policy: 6
Duration of Impact: 3.0 years
Commonness: 6/20
Statement of Opinion:
- While I don't have the disease, the improvement in support and awareness impacts my educational and family experiences positively.
- I hope this promotes more inclusive healthcare practices.
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 |
Physician (New York, NY)
Age: 55 | Gender: male
Wellbeing Before Policy: 6
Duration of Impact: 20.0 years
Commonness: 7/20
Statement of Opinion:
- More funding and educational support are always welcome to improve patient outcomes.
- Enhancing the transition from pediatric to adult care could reduce hospitalization rates.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 6 |
| Year 2 | 8 | 6 |
| Year 3 | 8 | 6 |
| Year 5 | 9 | 5 |
| Year 10 | 9 | 5 |
| Year 20 | 9 | 4 |
Community Health Worker (Houston, TX)
Age: 37 | Gender: female
Wellbeing Before Policy: 5
Duration of Impact: 10.0 years
Commonness: 8/20
Statement of Opinion:
- This is a huge relief as it means the programs I work on can expand and have a greater reach.
- Education is crucial; people often don’t know about the transition to adult care until it's too late.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 5 |
| Year 2 | 7 | 5 |
| Year 3 | 7 | 5 |
| Year 5 | 8 | 4 |
| Year 10 | 9 | 4 |
| Year 20 | 9 | 3 |
School Teacher (Detroit, MI)
Age: 30 | Gender: male
Wellbeing Before Policy: 4
Duration of Impact: 20.0 years
Commonness: 7/20
Statement of Opinion:
- If implemented well, this policy could significantly improve my access to necessary resources, reducing stress and absences from work.
- The transitional care aspect is particularly important as I have struggled with this myself.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 5 | 4 |
| Year 2 | 6 | 4 |
| Year 3 | 6 | 4 |
| Year 5 | 7 | 3 |
| Year 10 | 8 | 3 |
| Year 20 | 8 | 2 |
Research Scientist (Memphis, TN)
Age: 40 | Gender: female
Wellbeing Before Policy: 7
Duration of Impact: 10.0 years
Commonness: 5/20
Statement of Opinion:
- The focus on both treatment and research funding is promising.
- Improved public information campaigns will educate more families about managing the disease.
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 |
Social Worker (Baltimore, MD)
Age: 50 | Gender: male
Wellbeing Before Policy: 5
Duration of Impact: 15.0 years
Commonness: 6/20
Statement of Opinion:
- Increased funding will help bridge the gap in care access, particularly in underserved areas.
- I'm hopeful that the new scholarships will inspire more young professionals to enter this field.
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 | 8 | 5 |
| Year 10 | 8 | 5 |
| Year 20 | 8 | 4 |
Retired (Philadelphia, PA)
Age: 60 | Gender: female
Wellbeing Before Policy: 5
Duration of Impact: 20.0 years
Commonness: 7/20
Statement of Opinion:
- The resources will ensure my grandson gets better care than past generations received.
- Transitioning care is critical in managing chronic diseases, and this policy seems to address that well.
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 | 8 | 4 |
| Year 10 | 8 | 4 |
| Year 20 | 8 | 3 |
Cost Estimates
Year 1: $200000000 (Low: $150000000, High: $250000000)
Year 2: $210000000 (Low: $160000000, High: $260000000)
Year 3: $220000000 (Low: $170000000, High: $270000000)
Year 5: $250000000 (Low: $200000000, High: $300000000)
Year 10: $300000000 (Low: $250000000, High: $350000000)
Year 100: $700000000 (Low: $600000000, High: $800000000)
Key Considerations
- The target population is based on those with sickle cell disease currently diagnosed, covering a wide range from infants to adults requiring diverse services.
- Potential indirect costs include the impact on families of individuals with sickle cell disease who may require additional social and supportive services.
- Long-term benefits of improved public health might be more challenging to quantify but can be significant in community health settings.