My first experience in this life sciences industry, many years ago, was working as a pharmacist in a small town in the midwest. My most valued memories from that time were the instances when I was able to engage directly with patients or their families, hear about their health concerns, talk about how health conditions impacted their daily lives, and try to help by answering questions and providing advice as best I could. I was privileged to interact with real-life people on a daily basis and to learn from their stories.
Fast forward to today, and I believe I’m still doing the same thing, in a way – spending my life and my career trying to help patients manage their disease, this time though, by discovering and developing novel therapies at Vitae.
As my career has progressed over the years, things have changed. Health care intermediaries, for example, have increased their scope and depth of influence over the provision of health care. These intermediaries have varied and reasonable motives according to their role, including: requiring increased research time and expense to thoroughly characterize new therapies, protecting public safety by taking little to no risk, and protecting budgets by limiting, delaying or preventing access to new medicines. These dynamics can be beneficial for society, but sometimes there are serious mismatches at the patient level. As intermediaries’ adjudication increases, it’s possible for the patient’s interests to get lost.
In my opinion and from my early career experience, individual patients and their families are the ultimate and ideal arbiter of what constitutes unmet medical need, what constitutes appropriate risk / benefit and what represents real value in the solutions that we work to create.
At Bristol-Myers Squibb, where I ran the Immunology and Virology divisions in the early 2000s, I personally engaged with the HIV patient advocacy and activist community. Many of these same activists had been involved in the movement since the early days of AIDS. That movement played an integral and powerful role in the community’s success in changing the course of that disease, affecting life-saving change throughout the healthcare continuum. I truly believe that kind of dynamic force – ensuring a patient focus to dialogue on development, regulatory and access issues – can and will make a difference for patients in many other serious disease areas.
That’s why it is incumbent upon us, as decision-makers in the biotech industry, to learn from patients, their families, and nonprofit disease foundations that share our goal of accelerating the development of new treatments and cures. By engaging with patients early in the drug development process and better understanding their perspective – What is it like to live with this disease? What benefit/risk balance are you willing to accept? What symptoms most impact your daily life? – our research and development can remain patient-centered.
Patient advocacy organizations bring invaluable insights, resources, and forward-thinking approaches to tackling bottlenecks in the R&D process and speeding access to innovative medicines. These foundations are critical partners in our ongoing search for breakthrough cures. By interacting with these agents for change, biotechs can enrich our development strategies and, at the end of the day, become a more valuable and effective industry.
Our industry, our science, and our world will be better for it.
