LEGISLATIVE PRIORITIES

At Cure 4 The Kids Foundation—Nevada’s only outpatient pediatric cancer and rare disease treatment center—we have spent nearly two decades caring for children with cancer and rare diseases. We have watched families do everything right and still face months of delays. We have seen life-saving genetic tests denied as “investigational.” We have held the hands of parents who spent more time on hold with insurance companies than at their child’s bedside.
 
Our legislative priorities reflect what we see every day: a healthcare system where administrative barriers too often stand between children and the care they need to survive. We advocate for change because these families deserve a system that fights for them, not against them.

NEVADA LEGISLATIVE PRIORITIES

At Cure 4 The Kids Foundation, we support legislation that advances:

Research Support and Clinical Trials Access

  • Invests in building clinical trial infrastructure within Nevada, enabling more pediatric cancer and rare disease research to be conducted locally
  • Creates partnerships between Nevada healthcare institutions and national research centers to bring trials to our state
  • Funds patient navigation services to help families identify and access appropriate clinical trials
  • Provides travel and lodging assistance for families who must go out of state for clinical trial participation
  • Requires healthcare providers to inform patients about relevant clinical trial opportunities as part of standard care
  • Supports the development of a centralized, accessible database of clinical trials available to Nevada patients

Healthcare Workforce Development

  • Funds scholarship and loan forgiveness programs for healthcare professionals who commit to practicing pediatric oncology, genetics, and rare disease care in Nevada
  • Expands residency and fellowship positions in pediatric subspecialties at Nevada medical institutions
  • Invests in training programs for nurses, genetic counselors, and other allied health professionals specializing in pediatric cancer and rare disease care
  • Creates incentives for specialists to practice in underserved and rural areas of Nevada
  • Supports telehealth training and infrastructure to extend specialist expertise to communities without local access
  • Partners with Nevada's universities and medical schools to develop pipelines for pediatric subspecialty careers
  • Funds continuing education programs to ensure existing healthcare providers stay current on rare disease diagnosis and treatment

Insurance Authorization Reform

  • Establishes maximum timelines for prior authorization decisions, with expedited review (24-48 hours) for urgent and time-sensitive care
  • Requires continuity of care when patients experience coverage changes mid-treatment
  • Mandates coverage for genetic testing when ordered by a physician for diagnostic or treatment planning purposes
  • Creates accountability measures for insurers whose denials are routinely overturned on appeal

Medicaid Managed Care Consistency

  • Requires consistent coverage policies across all Medicaid managed care organizations for pediatric cancer and rare disease treatments
  • Ensures seamless transitions when patients move between Medicaid plans, honoring existing authorizations
  • Simplifies the Letter of Agreement (LOA) process for out-of-state care when specialized services are unavailable in Nevada
  • Mandates that EPSDT (Early and Periodic Screening, Diagnostic, and Treatment) protections are fully honored by all MCOs

Rare Disease Infrastructure

  • Establishes a statewide genetics clinic to provide centralized genetic counseling, testing, and care coordination
  • Creates a rare disease center of excellence within Nevada to reduce the need for out-of-state travel
  • Expands telehealth infrastructure, particularly in rural areas, to connect families with specialized expertise
  • Funds care coordination programs to help families navigate complex medical systems

Childhood Cancer and Rare Disease Awareness

  • Recognizes childhood cancer as a collection of rare diseases, ensuring inclusion in rare disease policy initiatives
  • Requires training for school personnel on accommodating students with cancer and rare diseases, including 504 plan and IEP implementation
  • Supports public awareness campaigns to improve early detection and reduce diagnostic delays
  • Establishes a statewide rare disease registry to improve data collection and inform policy decisions

Caregiver Support

  • Provides job protection for parents who must take extended leave to care for a child with a serious medical condition
  • Creates financial assistance programs for families experiencing income loss due to caregiving responsibilities
  • Funds respite care services to prevent caregiver burnout
  • Expands mental health resources specifically designed for caregivers and siblings of children with serious illness

NATIONAL LEGISLATIVE PRIORITIES

At Cure 4 The Kids Foundation, we support federal legislation that advances:

Prior Authorization Reform

  • Establishes enforceable timelines for prior authorization decisions across all insurance types, including employer-sponsored plans, individual market plans, Medicaid, and Medicare Advantage
  • Requires real-time electronic prior authorization to reduce administrative delays
  • Mandates that insurers report denial rates, overturn rates, and average processing times publicly
  • Prohibits "fail first" or step therapy requirements for serious conditions including cancer, when the prescribing physician determines a specific treatment is medically necessary
  • Holds insurers accountable when delays in authorization result in patient harm

Pediatric Cancer Research Funding

  • Increases dedicated funding for pediatric cancer research at the National Institutes of Health and National Cancer Institute
  • Incentivizes pharmaceutical development of pediatric-specific cancer treatments through extended exclusivity periods, tax credits, and grants
  • Supports the STAR Act (Childhood Cancer Survivorship, Treatment, Access, and Research Act) reauthorization and full funding
  • Expands access to clinical trials for pediatric patients, including support for travel and associated costs

Childhood Cancer as Rare Disease

  • Formally recognizes childhood cancer as a subset of rare diseases in federal policy and funding allocations
  • Ensures pediatric cancer patients benefit from the Orphan Drug Act and other rare disease incentives
  • Includes childhood cancer in rare disease research initiatives and data collection efforts
  • Promotes collaboration between the pediatric cancer and rare disease advocacy communities to amplify shared priorities

Protecting the EPSDT Guarantee

  • Strengthens EPSDT enforcement to ensure all Medicaid-enrolled children receive medically necessary care
  • Requires Medicaid managed care organizations to demonstrate compliance with EPSDT through regular reporting and audits
  • Establishes clear penalties for MCOs that systematically deny EPSDT-covered services
  • Protects EPSDT from cuts or restrictions in federal budget negotiations

Transparency in Insurance Denials

  • Requires all insurers to publicly report denial rates by service type, condition, and outcome of appeals
  • Mandates plain-language explanations for all denials, including the specific clinical rationale
  • Creates a federal database of denial patterns to inform policy and enforcement
  • Empowers patients with access to their own claims data in usable formats

Mental Health Parity for Pediatric Patients

  • Strengthens enforcement of the Mental Health Parity and Addiction Equity Act
  • Requires insurers to cover mental health services for pediatric patients with serious medical conditions, including cancer and rare diseases, without arbitrary visit limits
  • Expands training and reimbursement for pediatric psychologists and counselors specializing in medical trauma
  • Funds integrated mental health services within pediatric cancer and rare disease treatment centers

Access to Out-of-State Care

  • Requires insurers to cover out-of-state care when medically necessary services are not available within the patient's state or network
  • Streamlines Medicaid portability for families who must relocate temporarily for a child's treatment
  • Creates a federal framework for interstate care coordination, reducing administrative burdens on families
  • Provides travel assistance funding for families who must travel for specialized pediatric care