On this episode of the podcast, Terry and Bob hear from patient advocates about their recent virtual meetings on Capitol Hill. Patients Rising Now Patient Advocacy Day, held at the end of October, had patients and caregivers sharing their healthcare stories and asking for support on important bills to improve access and affordability to care.

Many of these patients have graduated from the Patients Rising Advocacy Master Class, which teaches patients and caregivers how to be more effective advocates. One key issue facing patients and advocates is step therapy, which forces patients to follow a prescribed path of medications dictated by their insurers. These required steps often prevent them from getting the drugs they need. State laws preventing step therapy have limited impact because most health plans are governed at the federal level and preempted by ERISA law. Patient advocates explain the consequences of being put on the wrong medication and highlight how the Safe Step Act can help them bypass step therapy.  

Terry discusses her conversations with Virginia legislators about updating healthcare finance to benefit patients. She talks with a patient advocate who explains the importance of protecting the FDA’s accelerated approval process. Some patients with rare conditions don’t have time to wait for the standard FDA approval process. Ensuring that medications that receive accelerated approval are covered by insurance is vital for these patients. 

Health economist Dr. Paul Langley chimes in on a new report by ICER that could hinder patient access to myasthenia gravis therapies. He explains how ICER invents evidence and ignores caregivers to come to its politicized conclusions. He highlights how ICER doesn’t make clinical value judgments but rather flawed cost analyses based on an unscientific business model. 

Legal expert Monica Bryant of Triage Cancer breaks down all the different kinds of Medicare to help confused patients understand what they should know when choosing a plan. She explains how each Medicare part has a different coverage and cost and the consequences of skyrocketing out-of-pocket costs. Monica describes how Medigap plans can offer patients much-needed protections even though they have an exclusion period for preexisting conditions. 

 

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