Recommended Resources
Tools, Advocacy Platforms, and Additional Reading
DISCLAMIER: This isn’t intended to be a comprehensive list, but rather a curated set of standout resources tied directly to the themes we covered in the webinar—from protecting patient access and affordability to navigating insurance hurdles and defending innovation.
You’ll find a mix of practical tools (think: help with insurance appeals or co-pay assistance), insightful newsletters and advocacy updates to stay informed, and platforms where patients are sharing their stories to drive change.
Whether you're looking to take action, support a patient, or just better understand how the system is (or isn't) working—there’s something in here for you.
General Access & Advocacy Resources
Directory tool that connects patients to professional patient advocates for support and appeals
Online publication that serves as a whistleblower platform aimed at driving meaningful reform
Newsletter covering market trends and insights on pricing, PBMs, and access
Opinion hub covering industry trends, with deep dive analyses into system inefficiencies and pricing structures
Global Healthy Living Foundation/ 50-State Network
Grassroots advocacy hub with resources across disease areas and key reform at the state level
News service delivering in-depth analysis and coverage of healthcare policy development
National Academy for State Health Policy (NASHP) Tracker
Offers interactive tools and maps to monitor state-level legislation on various healthcare issues
Patient Assistance Programs (PAPs) + Affordability Tools
PAN Foundation’s FundFinder Tool
Direct financial support by disease state
Offers one-on-one support, disease-specific resources, co-pay assistance programs, and case management services
PAP database, drug discount card search tool
PhRMA - MAT (Medical Assistance Tool)
Search tool for manufacturer-sponsored programs and innovation-focused data, policy tracking, and pricing analysis
Price transparency tool
Additional Issue-Specific Resources
Policy analysis and coalition campaigns for PBM reform
Coalition dedicated to reforms that lower out-of-pocket costs
Health literacy hub that digs into insurance jargon, coverage denial logic, and policy reform with humor and clarity
Fix Prior Auth (American Medical Association Initiative)
Advocacy campaign in partnership with HCPs to drive legislative momentum around prior auth reforms
Claim File Helper (ProPublica)
Template letters, tools, and story database for denied insurance claims
Rare Disease-Specific
Focuses on rare disease-specific legislative change
Tools, education, and patient support toolkits for rare communities
The National Organization for Rare Disorders (NORD)
Disease-specific information and patient assistance program directory
Cancer-Specific
American Cancer Society Cancer Action Network
Policy Tracker covering advocacy and legislative updates across all 50 states
Educational events, resources and materials for practical issues, including a toolkit for navigating finances after cancer
National Coalition for Cancer Survivorship
Robust advocacy, information, and resources related to health insurance.
Panelist Organizations/Affiliations
Advocacy, navigation, and financial assistance support for rare, ultra rare and undiagnosed pediatric GI patient families facing out-of-pocket and insurance denied expenses
Contact Caryl Harris @ averyshopepa@gmail.com for more information
Advocacy, community-building, and education for rare bone disorders
Contact Deborah Fowler @ deborah@softbones.org for more information
Leukemia & Lymphoma Society (LLS)
Financial assistance, treatment navigation, and policy leadership on OOP costs, step therapy, oral parity
Contact Michael Riotto @ mriotto@myeloma.org for more information
International Myeloma Foundation (IMF)
Legislative advocacy hub, treatment resources, and community support initiatives
Contact Michael Riotto @ mriotto@myeloma.org for more information
