Patient advocacy organizations play an indispensable role in the biopharmaceutical development process: They help scientists and researchers better understand what it’s like to live with the diseases they’re trying to cure.
That’s why BIO and our member companies are deeply committed to meaningful partnerships with patient advocacy organizations as we work to discover new medications to help patients live longer, healthier, more fulfilling lives.
Today, there are more than 250 biotechnology health care medications and vaccines on the market and another 1,000 or so in the FDA pipeline. Many of these products are considered “first in class,” meaning they represent entirely new approaches to treating and curing disease. The new frontiers being pioneered by biotech researchers have horizons that stretch further than the eye can see.
The biotechnology industry and the patient advocacy community share a common commitment to bring cutting-edge new therapies to patients. In order to achieve this shared mission, we work closely together to be responsive to patient needs, raise awareness and understanding of different medical conditions, and advance patient-focused public policies.
Patient advocacy organizations are comprised of dedicated men and women who’ve spent countless hours with patients and their families, hearing their concerns and working constructively within the health care delivery system to address them. Indeed, many in the patient advocacy community were once themselves patients or caregivers. This makes them uniquely positioned to provide support and disease education to current patients and caregivers, overcome the stigma of medical conditions, drive the development of new medicines for patients, and advocate for policies that promote medical innovation and patient access to novel therapies.
As the CEO of BIO – and someone who began my own career as a caregiver and advocate for children with health care challenges – I’m immensely proud of the biotech industry’s collaborations with the patient advocacy community. And I’m committed to ensuring our continuing partnerships remain true to our core goals: advancing drug development, respecting the independence of every partner, and fostering relationships built on integrity and trust.
That’s why I’m pleased to announce the release of BIO’s Guiding Principles for Interaction with Patient Advocacy Organizations. BIO appreciates the role that patient advocacy organizations serve as a trusted voice of the patients we collectively serve. They’re most closely connected with the real needs of patients facing illness and disease, and they’re best positioned to communicate the perspectives of the communities they represent.
Our guiding principles are a living document meant to inform BIO and its members as we continue to form and deepen these relationships. They were developed in close consultation with our partners in the patient advocacy community, and they were ratified by the BIO Board of Directors through a process led by our next BIO Board Chairman Paul Hastings. Paul, a biotech CEO and patient advocate himself, has become one of our industry’s foremost champions for the constructive role that patient advocacy organizations play in informing the development of new treatments.
We’ve seen so many recent examples of the extraordinary contributions that patient advocacy organizations make to the process of medical innovation. The Cystic Fibrosis Foundation partnered with academia and industry in the development process that led to the first therapy treating the underlying cause of cystic fibrosis. The Michael J. Fox Foundation successfully advocated for more research funding to commercialize therapies for Parkinson’s and other serious diseases. And Parent Project Muscular Dystrophy conducted a landmark patient preference study to make sure new treatments are responsive to the real needs of children with Duchenne Muscular Dystrophy.
Perhaps better than anyone, patients and their advocates know where the cracks are in our system; because of their insights, we’re better able to fill those gaps, expand access and improve outcomes. Albert Einstein famously said, “We learn from yesterday, live for today, and hope for tomorrow. The important thing is to never stop questioning.” Patient advocacy organizations never do, and patients are better for it.