S3, Ep 9- Advocacy and Legislation: Speaking Up for Patients Matters

Over the last 20 years, the United States has made good progress in expanding access to care, yet millions of patients are still struggling to pay for their health care. In this episode, our hosts discuss current legislation advancements that help protect patient assistance programs concerning their out-of-pocket costs and how patients are being taken advantage of through insurer-initiated programs such as accumulators and maximizers. Our guest, JP Summers, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation (GHLF), brings her patient perspective to the discussion having recently met with policymakers in Wisconsin. Among the highlights in this episode: 1:45: To date, 16 states have passed legislation protecting patient assistance programs 2:28: What are patient assistance programs? 3:25 “On average, out-of-pocket costs for the average patient have been going down in the United States for pharmaceuticals. They [patients] spend less in out-of-pocket costs for drugs today than let's say 10 or 20 years ago. But that's an average. And you have to be careful with averages because what happens is that there is a group of patients who are clearly being harmed by the current policies,” says Dr. Robert Popovian, Chief Science Policy Officer at GHLF 4:22: Dr. Popovian discusses why there is a group of patients who are struggling more than average with health care costs 5:46: The impact of accumulators and maximizers 7:23: Dr. Popovian details some of the legislative advancements made at the state level to better limit health care costs for patients 8:35: GHLF has built an interactive tool to evaluate whether state laws protecting patient assistance programs impact health care premiums: https://ghlf.org/copay-assistance-protection/ 9:29: Dr. Popovian explains the pushback from insurers and PBMs (pharmacy benefit managers) against reforms aimed at protecting patient assistance programs 11:02: JP Summers, a patient herself, explains the importance of being a patient advocate 11:44: JP Summers discusses her experience in getting patient assistance from the biopharmaceutical industry 12:23: “I feel that there was a lot of positive things being said [at a meeting JP attended with lawmakers in Wisconsin]. There were several patients besides myself there to advocate to share their personal stories. But what really caught my attention was the press. They were very involved. They were asking questions, and that tells me that they're invested in what we're looking to do in Wisconsin,” says JP 15:03: Dr. Popovian shares some final thoughts Contact Our Hosts Dr. Robert Popovian, Chief Science Policy Officer at GHLF: [email protected] Conner Mertens, Patient Advocate and Community Outreach Manager at GHLF: [email protected] We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected] Listen to all episodes of Healthcare Matters on our website or on your favorite podcast channel.See omnystudio.com/listener for privacy information.