Top 10 Resources Every Patient Advocate Should Know

 Empowering yourself with the right tools can make all the difference when advocating for care, coverage, and fairness.

1. Medicare Coverage Database (MCD)

Website: https://www.cms.gov/medicare-coverage-database

This database provides official Medicare coverage determinations (both National and Local). Advocates can check whether a service or treatment is “reasonable and necessary” and see how different regions interpret coverage rules.

2. FDA Drug Databases

Website: https://www.fda.gov/drugs

Includes the Orange Book (approved drugs), Purple Book (biologics), and NDC Directory. These are essential for verifying FDA approval status and identifying whether compounded medications or ingredients are covered.

3. State Department of Insurance

Each state’s Department of Insurance has a consumer assistance division that helps with appeals, external reviews, and complaints against insurance companies.
Tip: Look for “Consumer Complaints,” “External Review,” or “Appeals” sections on your state’s site.

4. Patient Advocate Foundation (PAF)

Website: https://www.patientadvocate.org

A national nonprofit offering case management, co-pay relief, and insurance navigation help. Excellent for patients overwhelmed by denials, debt, or billing issues.

5. National Council on Aging (NCOA) BenefitsCheckUp

Website: https://www.benefitscheckup.org

Helps patients—especially seniors—find financial assistance for medications, healthcare, housing, and food. An often-overlooked gem for low-income or disabled advocates.

6. Centers for Medicare & Medicaid Services (CMS) Manuals and Regulations

Website: https://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals
CMS manuals (like the Medicare Benefit Policy Manual) define “reasonable and necessary,” coverage limits, and appeal procedures. Knowing these rules strengthens your arguments in appeals.

7. HealthCare.gov & State-Based Marketplaces

Website: https://www.healthcare.gov

Even if you’re not on Marketplace coverage, this site provides useful definitions and consumer protection resources, including rights to external review and how to file complaints.

8. 211.org (United Way)

Website: https://www.211.org

A nationwide database for local support—financial help, prescription assistance, transportation to medical care, or caregiving support. Advocates can use it to connect clients with community-based resources.

9. National Organization for Rare Disorders (NORD)

Website: https://rarediseases.org

Provides rare disease information, patient assistance programs, and advocacy guides. Especially valuable for patients with conditions insurance companies often misunderstand or deny.

10. AKG Advocacy Resource Hub

Website: https://akgadvocacy.org

Curated guides, templates, and checklists designed to help patients fight denials, write effective appeals, understand coverage laws, and communicate with providers.
Check out:

  • “Steps to Take When Your Medication Is Denied”

  • “What ‘Medical Necessity’ Really Means”

  • “Advocating Starts at Your Doctor’s Office”

💡 Bonus Tip: Build Your Own Resource Binder

Create a binder or digital folder labeled “Advocacy Tools” with:

  • Insurance manuals

  • Contact lists for your providers and plan representatives

  • Appeal and complaint templates

  • Key research and studies for your condition

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