Bill Overview
Title: Gabriella Miller Kids First Research Act 2.0
Description: This bill reauthorizes through FY2027 a pediatric disease research initiative within the National Institutes of Health (NIH) and requires the NIH to coordinate pediatric research activities to avoid duplicative efforts. Additionally, the Department of Health and Human Services must report, within five years, to Congress about research funded through the initiative.
Sponsors: Rep. Wexton, Jennifer [D-VA-10]
Target Audience
Population: Children suffering from pediatric diseases
Estimated Size: 5000000
- The bill focuses on pediatric disease research, directly impacting children suffering from diseases.
- Pediatric disease research may lead to improved treatments and cures, indirectly affecting families of children with diseases.
- Researchers and healthcare providers specializing in pediatric care are also impacted by increased research opportunities and collaboration.
- By improving pediatric care, the bill can have long-term benefits on population health, potentially reducing the burden of disease on society.
- Coordination by NIH aims to streamline research efforts, making it more efficient and impactful.
Reasoning
- Given the target population of approximately 5,000,000 American children suffering from pediatric diseases, it is essential to include subjects directly impacted, such as children with diseases and their families, as well as indirectly impacted participants, such as healthcare providers and researchers.
- Personal experiences will vary based on the role in the healthcare system and personal proximity to the diseases being researched. It's crucial to take into account those not directly impacted by the policy to provide a diverse perspective on its potential reach.
- The policy budget limits its impact to specific types disease research over time, potentially leaving some pediatric diseases with minimal improvement.
- We also need to acknowledge longitudinal changes over a 20-year span due to the foundational nature of research which might result in significant long-term benefits despite short-term limits.
- Interview subjects will include those who will benefit directly from immediate research outcomes as well as those who hope to see future benefits.
Simulated Interviews
Pediatric Oncologist (Raleigh, NC)
Age: 34 | Gender: female
Wellbeing Before Policy: 7
Duration of Impact: 20.0 years
Commonness: 12/20
Statement of Opinion:
- The policy will allow us to advance our research, which could improve current treatments.
- In the short term, this means more resources for ongoing projects and potential for new studies.
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 | 9 | 7 |
| Year 10 | 9 | 7 |
| Year 20 | 10 | 7 |
Parent of a child with cystic fibrosis (Los Angeles, CA)
Age: 45 | Gender: male
Wellbeing Before Policy: 5
Duration of Impact: 20.0 years
Commonness: 10/20
Statement of Opinion:
- This policy gives us hope that research could lead to better treatments or even a cure.
- Coordinated efforts are crucial to avoid redundant studies and to maximize impact.
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 | 9 | 5 |
Research Scientist (Boston, MA)
Age: 29 | Gender: female
Wellbeing Before Policy: 6
Duration of Impact: 10.0 years
Commonness: 14/20
Statement of Opinion:
- Increased funding and focus could accelerate breakthroughs in our studies.
- This policy might help us secure grants that we often struggle to obtain despite the importance of our work.
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 | 8 | 6 |
| Year 10 | 9 | 6 |
| Year 20 | 9 | 6 |
Healthcare Policy Analyst (Chicago, IL)
Age: 37 | Gender: other
Wellbeing Before Policy: 8
Duration of Impact: 10.0 years
Commonness: 8/20
Statement of Opinion:
- The streamlining of research is an essential component that could optimize fund usage.
- Ensuring equitable distribution of research benefits across different demographics is paramount.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 8 | 8 |
| Year 2 | 8 | 8 |
| Year 3 | 9 | 8 |
| Year 5 | 9 | 8 |
| Year 10 | 9 | 8 |
| Year 20 | 9 | 8 |
Pharmaceutical Executive (Houston, TX)
Age: 52 | Gender: male
Wellbeing Before Policy: 9
Duration of Impact: 5.0 years
Commonness: 6/20
Statement of Opinion:
- This policy can potentially expedite the introduction of innovative drugs into the market by boosting research advancements.
- Collaboration with national research initiatives is beneficial for commercial developments.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 9 | 9 |
| Year 2 | 9 | 9 |
| Year 3 | 9 | 9 |
| Year 5 | 9 | 9 |
| Year 10 | 8 | 9 |
| Year 20 | 8 | 9 |
Graduate Student (New York, NY)
Age: 25 | Gender: female
Wellbeing Before Policy: 6
Duration of Impact: 10.0 years
Commonness: 14/20
Statement of Opinion:
- Improved funding and coordination could potentially be a case study for my research.
- The optimizations expected from this policy are promising.
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 |
Social Worker (Denver, CO)
Age: 40 | Gender: female
Wellbeing Before Policy: 7
Duration of Impact: 20.0 years
Commonness: 10/20
Statement of Opinion:
- Families benefit from the hope that enhanced research yields faster answers to their children's conditions.
- The policy could foster a stronger network of support services around these research findings.
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 | 9 | 7 |
| Year 10 | 9 | 7 |
| Year 20 | 10 | 7 |
Therapist (Phoenix, AZ)
Age: 60 | Gender: male
Wellbeing Before Policy: 6
Duration of Impact: 15.0 years
Commonness: 10/20
Statement of Opinion:
- Research advancements give hope, which is critical to the mental health of these families.
- Knowing there is a push towards coordinated research efforts can be reassuring for families.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 6 |
| Year 2 | 7 | 6 |
| Year 3 | 8 | 6 |
| Year 5 | 8 | 6 |
| Year 10 | 9 | 6 |
| Year 20 | 9 | 6 |
Student (Miami, FL)
Age: 12 | Gender: male
Wellbeing Before Policy: 5
Duration of Impact: 20.0 years
Commonness: 4/20
Statement of Opinion:
- I hope new research means I can spend less time sick and more time playing with friends.
- It would be great if doctors could learn more from other cities and countries about my condition.
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 |
Public Health Official (Seattle, WA)
Age: 50 | Gender: female
Wellbeing Before Policy: 8
Duration of Impact: 15.0 years
Commonness: 7/20
Statement of Opinion:
- Coordinated efforts can help distribute the benefits of research more evenly across different communities.
- It would be crucial to ensure that even marginalized communities benefit from the findings of such research.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 9 | 8 |
| Year 2 | 9 | 8 |
| Year 3 | 9 | 8 |
| Year 5 | 9 | 8 |
| Year 10 | 9 | 8 |
| Year 20 | 10 | 8 |
Cost Estimates
Year 1: $20000000 (Low: $15000000, High: $25000000)
Year 2: $21000000 (Low: $16000000, High: $26000000)
Year 3: $22000000 (Low: $17000000, High: $27000000)
Year 5: $24000000 (Low: $19000000, High: $29000000)
Year 10: $30000000 (Low: $20000000, High: $28000000)
Year 100: $20000000 (Low: $15000000, High: $29000000)
Key Considerations
- Coordination of research is crucial to avoid duplicative efforts and maximize the impact of the research funding.
- The pediatric research initiative aligns with national priorities on health, particularly focusing on children's health.
- Monitoring and subsequent reporting by the Department of Health and Human Services is necessary to ensure accountability and to measure program success.
- The current fiscal environment and budget considerations may affect the scope and scale of the funding allocation within NIH budgets.