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With the goal of breaking down barriers so patients can access innovative medicines they need, the Biotechnology Innovation Organization (BIO) is bringing patient advocates together with the biotech industry, academia, and regulators for the Oct. 26-28 Patient Advocacy Changemakers Event (PACE) in Washington, D.C.
“Patient advocacy is at the core of BIO’s mission,” says BIO President and CEO John F. Crowley. “By putting patients first, we stay focused on why we work so hard every day to ensure that our laws and policies help forward science, innovation, and access to life-changing medicines. PACE is a moment to connect one-on-one with the patient advocates who sit at the heart of our mission to advance patient-focused public policies.”
“I am thrilled to be leading our 14th annual patient advocacy event, which we’ve rebranded to reflect the true changemakers: patients whose experiences, stories and hopes inspire us every day.” adds BIO’s Chief Patient Advocate Michele Oshman.
This year’s theme, “Breaking Barriers to 21st Century Access,” focuses on supporting development and commercialization of innovative medicines, and ensuring every patient can access the innovations prescribed to them.
In an effort to guide this process, BIO will be presenting an updated version of its “Principles for Ethical Engagement” at the event. The principles serve as a framework for engaging the patient community and patient advocacy organizations responsibly, meaningfully, and with integrity. The principles call for respecting independence, providing support, patient engagement in clinical development, transparency, and advocating to improve patient outcomes.
“BIO’s member companies save, extend, and enhance lives by preventing and alleviating disease,” says Eric Dube, President and CEO of Travere Therapeutics. “The other part of that equation is working with patient advocacy organizations to understand the needs of families and patients from their point of view to ultimately guide research, development, and policy to change the course of every patient’s life for the better.”
Important discussions we will be watching at PACE include:
- State-level trends: What happens at the state level is always a harbinger of what will happen at the federal level later. What has been going on this year, and what can we expect for next year?
- FDA discussion: BIO President and CEO, John F. Crowley will sit down with George Tidmarsh, Director at the Center for Drug Evaluation and Research, to discuss the co-evolution of drug development and federal regulation.
- Vaccination challenges: Vaccines have saved millions of lives and drastically reduced or eliminated deadly and debilitating infectious diseases like smallpox, polio, and measles and prevented cancer. But today, misinformation, pseudoscience and ideology are sowing doubt and confusion about these miracles of biotechnology innovation and putting our national health at risk. A panel looks at how to restore the country’s faith in vaccines.
- Inflation Reduction Act (IRA): Panelists will explore unintended effects on patients and the small molecule and orphan drug pipeline.
- 340B program: This federal program has ballooned in the decades since its creation, and patients are paying the price. What are patient advocates and the biotech industry saying will help solve the problem?
“I’ve learned that partnerships with patient advocates are among the most important in our industry. We exist so patients can benefit from us—not the other way around,” says Paul Hastings, CEO of Nkarta Therapeutics. “When stakeholders convene at BIO’s PACE, policy needs are identified, patient priorities come to the fore, and action happens.”
