Advocacy to Action: Insights From Patients Rising Fly-In 2024

Last month, our partner Patients Rising held its annual “We the Patients” fly-in on Capitol Hill, uniting nearly 60 patient advocates from over 20 states. The event aimed to transform healthcare and promote health equity, with advocates engaging with 70 congressional offices.

We know firsthand how government policies can sometimes result in greater costs than benefits if not thoroughly evaluated. That’s why these fly-ins are so crucial. In the healthcare space, fly-ins provide an opportunity for members of congress to hear directly from patients out there on the front lines. Their personal stories are the best way to educate policymakers on the nuances of healthcare issues, especially when it comes to challenges patients and their loved ones are facing.

And while the discussion around proposed right-to-repair policies was not the focus of this fly-in, healthcare is a rapidly evolving field, with frequent changes in technology, treatment options, and regulatory landscapes. And only the advocates can convey the real-world impact of policies. 

As a reminder, while right to repair policies might be suitable for farming equipment and personal devices, extending the right-to-repair to medical devices could have severe consequences for health and well-being. These complex machines require expert training and federal oversight to ensure safe repairs.

Policymakers cannot be seen as overlooking patient safety by allowing unregulated third-party repairs of medical devices, increasing the risk of malfunctions when repairs are not FDA-regulated. While

Repairing life-saving medical equipment carries significantly higher risks than repairing personal devices. Unlike fixing a phone screen, repairing MRI machines and CT scanners requires specialized expertise and strict regulatory compliance. Third-party servicers are not mandated to follow FDA regulations or report adverse events when repairs fail, disproportionately impacting disadvantaged communities who have the most to lose.

These federal regulations are crucial for ensuring patient safety. Without consistent oversight, broad right-to-repair legislation could expose patients to increased risks from defective repairs and cybersecurity vulnerabilities. Properly trained servicers understand both hardware and software intricacies, reducing data breach risks. Additionally, right-to-repair mandates might hinder technological innovation by pushing manufacturers toward standardization instead of fostering design advancements.

We remain committed to consumer sovereignty—the right of consumers to make their own decisions—and emphasize providing better information for informed choices rather than having others decide on their behalf. This principle is crucial in creating systemic changes with partners such as Patient Rising who are advocating for better quality of care, empowering those with chronic and rare illnesses, and ensuring all patients have access to safe, effective, and high-quality medical devices.