Mar 29, 2017
I’ve had the privilege of working in the biopharmaceutical sector for more than 35 years. During this time, our nation’s healthcare system has experienced transformative change, largely driven by knowledge and research that is propelling medical invention. Diseases that were once thought untreatable are becoming chronic, with outright cures in our grasp.
For me, two deeply personal experiences have shaped my perspective in healthcare: one from nearly 40 years ago, the other within the past few years. Earlier today, I shared these experiences at the Astellas Patient Advocacy Summit in Washington, D.C.
In 1980, I graduated from Cornell University and eventually landed a job working in advertising on Madison Avenue in New York City. As a young gay man living and working in NYC in the early eighties, I had many friends who were directly affected by HIV/AIDS. During the first few years of the epidemic, we had no treatment, no hope and a highly-limited sense of acceptance and understanding from the medical community. In fact, the first New York Times article on AIDS in the summer of 1981 encouraged patients to seek chemotherapy as treatment.
We’ve all read the stories and watched the movies, but being in the middle of it was one of the most trying, exhausting and debilitating experiences of my life. It forever provided me with a sense of what really matters in life and how a disease as horrible as AIDS can both destroy and inspire millions.
Several years after arriving in New York City, I enrolled in a joint graduate program between Columbia University and Union Theological Seminary. I was also volunteering with an AIDS patient advocacy organization at the time. I initially thought that I wanted to become a pastor, but, because of my volunteer experience, I jumped at the opportunity to work with the AIDS community.
A few years later, I got a call from a large multinational pharmaceutical company in New Jersey asking if I would serve as its liaison to the HIV/AIDS community. It was a chance I could not pass up, especially given that the company was one of the first to be working on potential treatments for the disease.
HIV/AIDS brought the whole system together like never before: patients, scientists, physicians, pharmaceutical companies, diagnostic companies and hospitals. Everyone had a role to play to make it a manageable disease – and patients and stakeholder allies were at the center of the fight.
We changed how the FDA reviews and approves medicines. We brought policymakers to the table with advocates and patients. These efforts that began more than 30 years ago continue to pay off. There is still more work to be done, but HIV/AIDS is now a chronic disease – rather than a fatal disease – for millions of people.
Despite such successes, one area of our healthcare system that warrants elevated focus is truly patient-centered care delivery. All care decisions should begin and end with the patient in mind, yet our system has often moved away from what the patient wants, deserves, and expects.
This is where a more recent personal experience comes to mind. My nephew, Brooks, took his life after a long struggle with depression. He was like a son to me because my parents had also raised him, but like many of us, he grew up in a culture in which depression was something to be ashamed of. He didn’t have consistent or comprehensive health insurance and, even worse, he lacked the access to consistent care because he lived in rural America. He was only 28 years old and the proud father of four-year-old twins.
In the broader conversation on what’s important in healthcare today, the patient too often gets lost. We continue to see increased spending on care delivery that could, in many cases, be prevented through disease management. It’s always hard to look back and second guess, but I’m convinced that the system could have done more for Brooks.
When it comes to fighting disease, it’s rarely easy to pinpoint the moment (or series of moments) that mark the turning point. For me, I knew we had turned the corner in the fight against HIV/AIDS when I stopped getting calls at two and three o’clock in the morning with news that another friend had passed. My friends, colleagues and loved ones were living longer. They were not only surviving, they were thriving because of waves of medical progress.
At the same time, however, we have yet to turn the corner for millions of Americans, including those who face significant access restrictions like my nephew.
We must change the trajectory of debilitating diseases, while keeping the patient in focus at all times. If we do this, together, millions of Americans who are getting calls in the middle of the day or night – whether it be for depression, for HIV/AIDS, for cancer, for Alzheimer’s – will get fewer of them.
I’m honored to be a part of a company and an industry that are working to make this happen.