Oct. 1, 2021

Patient How-To Guide: Health Policy Advocacy

Patient How-To Guide: Health Policy Advocacy

Numerous health policies are under debate in Congress. As Senators and Representatives hash out drug pricing legislation and more, where are patients in the conversation?

Advocate and former Ohio state legislator Randi Clites shares how patients can get involved in policy advocacy. Plus, how the rise of Rare Disease Advisory Councils in state legislatures are giving patients a seat at the table.

Terry and Dr. Bob deliver a healthcare policy crash course on this week in D.C., and Kate speaks with Jen Roman about her rare disease and mission to combat misconceptions about rare disease patients. 


Terry Wilcox, Executive Director, Patients Rising

Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest

Kate Pecora, Field Correspondent, Patients Rising


Randi Clites, Rare Disease Policy Director, Little Hercules Foundation 

Jen Roman, Rare Disease Advocate

Shannon Sharp, Patient Correspondent


Senate passes infrastructure bill that restarts sequester cuts, delays rebate rule

NORD Statement on Proposed Changes to the Orphan Drug Tax Credit

Medicaid Home and Community Based Services 

Congress Likely to Scale Back HCBS Funding as Part of Budget Compromise 

The High Costs of Democrats’ prescription drug price-setting

Rare Disease Advisory Councils by State

Need help?

The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org

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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.