May 13, 2022

Have Health Plans Abandoned Rare Disease Patients?

Have Health Plans Abandoned Rare Disease Patients?

“Your medication is no longer covered” are the words no patient wants to hear. Yet this is a common occurrence for patients with rare diseases who are on private health insurance plans. In an effort for plans to save money, they’re dropping coverage for rare disease treatments and sending patients to patient assistance funds. 

But once those funds are maxed out, it can leave patients on the hook for enormous copays. Guest Randi Clites of the Little Hercules Foundation shares how her son’s hemophilia treatment was dropped unexpectedly from their plan. Now, she’s on the hook for a $21,000 bill.

Kelly Maynard, Founder and President of the Little Hercules Foundation, also joins the show to share how private plans are able to get away with this, and policy solutions that can close the loophole and protect patient coverage for rare disease treatments. 

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


Kelly Maynard, President of the Little Hercules Foundation

Randi Clites, Rare Disease Policy Director of the Little Hercules Foundation

Angela Deeds, Patient Advocate 


Trends of Prescription Drug Manufacturer Rebates in Commercial Health Insurance Plans, 2015-2019

Hospitals Look to Raise Treatment Costs as Nurses' Salaries Increase - WSJ

Little Hercules Foundation

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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.