Bill Overview
Title: New Era of Preventing End-Stage Kidney Disease Act
Description: This bill addresses rare kidney diseases through research, training for health professionals, and other means. It also modifies requirements for Medicare drug plan formularies that include drugs for rare diseases or conditions. The Department of Health and Human Services (HHS) must convene a conference focused on diagnosis and treatment of rare kidney diseases; study risk factors, access to care (including to genetic and genomic testing), and other matters related to rare kidney diseases; and establish grants for supporting kidney disease education and referrals in communities of color. HHS may award grants to educate and train health professionals about kidney disease and nephrology. Additionally, health professional schools that receive certain HHS funding for educating underrepresented minority individuals must support postgraduate nephrology training. The National Institutes of Health (NIH) must report on diversity in its kidney disease research. The NIH may also (1) support research on rare kidney diseases that, among other requirements, includes persons of color in study populations; and (2) establish regional centers of excellence for rare kidney diseases. The Centers for Medicare & Medicaid Services must evaluate methods for (1) treating rare kidney diseases, with a focus on delaying dialysis and transplant; and (2) raising awareness about rare kidney diseases, including in communities of color. Furthermore, if a Medicare drug plan formulary includes a drug to treat a rare disease or condition, at least two members of the committee that develops or reviews the formulary must have expertise in the field of medicine related to that drug.
Sponsors: Rep. Butterfield, G. K. [D-NC-1]
Target Audience
Population: People with rare kidney diseases
Estimated Size: 2000000
- The bill targets individuals with rare kidney diseases, which are a subset of the broader population affected by kidney disease.
- Kidney disease affects about 850 million people globally, but rare kidney diseases are a smaller subset with less precise global prevalence data available.
- A significant portion of kidney disease cases, though not necessarily rare ones, are in racial and ethnic minority populations, who are targeted by the bill's educational and research initiatives.
- The legislation also has a direct impact on healthcare professionals who will receive training, as well as researchers involved in kidney disease research.
- Medicare beneficiaries and those under Medicare drug plans will be affected due to changes in policy and drug plan formularies, though the primary focus is on those with rare kidney conditions.
Reasoning
- The policy primarily impacts people with rare kidney diseases, healthcare providers, researchers, and individuals enrolled in Medicare plans. While the target population for the application is only about 2 million individuals within the US, the program also indirectly impacts healthcare providers and researchers, thereby widening the potential beneficiaries who perceive its effects.
- Considering the budget constraints, this policy could realistically prioritize the most vulnerable and underserved communities initially, ensuring thorough implementation where it is needed most. Training and research enhancement could lead to gradual improvements rather than instant outcomes, affecting well-being scores in a steady upward trend.
- Given the focus on minority and underserved communities, a significant portion of the affected population might see improvements due to increased access to genetic and genomic testing, enhanced treatment protocols, and better healthcare professionals' training.
- Unchanged well-being for some individuals can result due to their current lack of involvement with the healthcare system or if their condition does not worsen significantly over time.
Simulated Interviews
Construction Worker (Chicago, IL)
Age: 45 | Gender: male
Wellbeing Before Policy: 5
Duration of Impact: 10.0 years
Commonness: 3/20
Statement of Opinion:
- I hope this bill means better access to drugs and tests that I've never been able to afford or get approved with insurance.
- The focus on minority communities feels like it's about time.
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 | 5 |
| Year 10 | 9 | 5 |
| Year 20 | 8 | 4 |
Academic Researcher (Cambridge, MA)
Age: 60 | Gender: female
Wellbeing Before Policy: 7
Duration of Impact: 20.0 years
Commonness: 5/20
Statement of Opinion:
- This policy enables more inclusive research on rare kidney diseases, which is crucial for developing comprehensive treatments.
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 | 8 |
| Year 10 | 9 | 8 |
| Year 20 | 9 | 8 |
Retired (Miami, FL)
Age: 72 | Gender: male
Wellbeing Before Policy: 4
Duration of Impact: 15.0 years
Commonness: 6/20
Statement of Opinion:
- Any improvement in how Medicare handles kidney disease will be a big help for people like me.
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 | 7 | 3 |
| Year 10 | 7 | 3 |
| Year 20 | 7 | 2 |
Health Professional (Houston, TX)
Age: 29 | Gender: female
Wellbeing Before Policy: 6
Duration of Impact: 10.0 years
Commonness: 4/20
Statement of Opinion:
- Expanding training opportunities in nephrology will help me extend better care to those who need it.
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 | 7 |
| Year 10 | 9 | 7 |
| Year 20 | 8 | 7 |
Community Health Worker (Phoenix, AZ)
Age: 34 | Gender: other
Wellbeing Before Policy: 5
Duration of Impact: 20.0 years
Commonness: 7/20
Statement of Opinion:
- This policy is desperately needed; it feels like acknowledging our existence and struggles. Education is powerful.
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 | 9 | 5 |
| Year 20 | 9 | 5 |
IT Consultant (Seattle, WA)
Age: 55 | Gender: female
Wellbeing Before Policy: 8
Duration of Impact: 0.0 years
Commonness: 15/20
Statement of Opinion:
- It's great that such specific areas get attention, but it doesn't really relate to my life at all.
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 |
Farmer (Rural Alabama)
Age: 50 | Gender: male
Wellbeing Before Policy: 4
Duration of Impact: 15.0 years
Commonness: 3/20
Statement of Opinion:
- If this can bring more healthcare professionals our way, I'm all for it. We’ve been forgotten but this could change that.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 5 | 4 |
| Year 2 | 5 | 4 |
| Year 3 | 6 | 4 |
| Year 5 | 7 | 4 |
| Year 10 | 7 | 4 |
| Year 20 | 6 | 4 |
Medicare Recipient (Denver, CO)
Age: 62 | Gender: female
Wellbeing Before Policy: 5
Duration of Impact: 10.0 years
Commonness: 6/20
Statement of Opinion:
- I'm hopeful that this policy will catch problems early and prevent escalation to disease.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 5 | 5 |
| Year 2 | 6 | 5 |
| Year 3 | 6 | 5 |
| Year 5 | 7 | 5 |
| Year 10 | 7 | 5 |
| Year 20 | 6 | 5 |
Pharmaceutical Sales (New York, NY)
Age: 40 | Gender: male
Wellbeing Before Policy: 7
Duration of Impact: 5.0 years
Commonness: 10/20
Statement of Opinion:
- Changes in the drug formulary could affect sales and contracts but this bill might also open new opportunities.
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 | 7 | 7 |
Retired Registered Nurse (San Diego, CA)
Age: 70 | Gender: other
Wellbeing Before Policy: 6
Duration of Impact: 20.0 years
Commonness: 8/20
Statement of Opinion:
- Seeing diverse groups get help goes a long way in helping others like me sleep better at night. It's a necessity.
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 | 8 | 6 |
| Year 20 | 7 | 6 |
Cost Estimates
Year 1: $120000000 (Low: $100000000, High: $150000000)
Year 2: $115000000 (Low: $95000000, High: $145000000)
Year 3: $110000000 (Low: $90000000, High: $140000000)
Year 5: $100000000 (Low: $85000000, High: $130000000)
Year 10: $80000000 (Low: $60000000, High: $100000000)
Year 100: $20000000 (Low: $10000000, High: $30000000)
Key Considerations
- The scope and scale of the bill's educational and training components.
- Potential regional variations in the prevalence of rare kidney diseases that could affect cost distributions.
- The bill's reliance on the effective implementation of outreach and training programs.
- Possible efficiencies gained through policy changes in Medicare drug formularies.