ICYMI: Grounding policy reforms in real lived patient experiences is key to improving outcomes

On October 15, I joined Voters for Cures patient advocate Cristi Waltz at Reuters Pharma and Patient USA 2024 where we discussed her experience with autoimmune hemolytic anemia (AIHA). Both Cristi and her grandson have this rare immune disorder.

She spoke about the barriers that insurers and their middlemen have placed between them and their treatments, including steering them to their own pharmacy. That forced them to travel more than 8 hours roundtrip each month to pick up her grandson’s medicine. She also talked about the difficulties she experienced with the “fail first” requirements her insurance put her through, making her try other treatments first before they approved the one her doctor recommended. Policymakers must take action to hold insurers and pharmacy benefit managers (PBMs) accountable by breaking the link between PBM compensation and the list price of medicines and passing on negotiated savings to patients.

I was also inspired by Cristi’s hope for future scientific advancements for diseases like AIHA. While her grandson is stable today, and the outlook for patients with AIHA is good, therapy changes or adjustments are sometimes needed. New innovations that minimizes side effects and improves long-term prognosis are her hope. But she is concerned about policies that may hinder future R&D and put patients like her and her grandson at risk. We must safeguard our strong IP protections, efficient regulatory system, competitive market and incentives that allow public and private entities to collaborate—fostering innovation that allows patients to live longer, healthier lives. 

Thanks to Cristi for sharing her story – it is a reminder of why patient experiences must inform how we approach policy reform.

Read more about the Voters for Cures program here: https://votersforcures.org/