Like other physicians, the past few months have left me with a multitude of feelings; helplessness, fear, anger, and uncertainty among them.
As an oncologist, I’ll confess, there’s another emotion I’ve been grappling with…frustration. As of mid-May, there will be close to 80,000 deaths from COVID-19 in the U.S. During this same time, there have been over 160,000 people who died from cancer.
I’m not trying to diminish COVID at all. COVID is quite a bit like cancer – it does not discriminate for age, race, sex, family status, religion. It doesn’t care. It takes mothers from children, spouses from each other, and kills our siblings, friends, and colleagues.
Here’s the singular reason I find both conditions so frustrating; Cancer and COVID are considerably more devastating than they should be because our healthcare system is broken. And while I see some promising changes when it comes to COVID, when it comes to cancer, we don’t work together. We don’t share data. We don’t foster collaboration among all researchers, clinicians, and stakeholders. We don’t take steps to ensure that everyone benefits equally.
A recent visit with a patient viscerally reiterated this point. The patient was “Bill,” and he was in his mid-60s. He had just retired and was looking forward to pursuing his two great passions: taking care of his invalid wife and playing Santa Claus in the holiday season to bring joy, hope, and excitement to children.
But now, a few months into his retirement, his passion had been clouded by a nagging pain in his back that was getting steadily worse. This prompted his family physician to order the scan and biopsy that led to the visit.
As gently as possible, I explained that a mass in his pancreas was causing his back pain. He bravely listened as I showed him and his wife the scans. The mass in his pancreas had spread, and there were no curative options. As information began to register, Bill’s wife started to shake. I could sense that she was on the verge of a complete emotional and physical breakdown. Without a miracle, she was going to lose her companion and caregiver. She had needed his care; how could she take care of him? What would become of her when he was gone?
Bill asked a few questions. “Can this be cured … how sick will I become … will I be able to take care of my wife … can I still serve as Santa Claus?” All these asked while he was trying to console his wife, who, by this time, was sobbing uncontrollably.
As this scenario played out, as it has so many other times in the last 20 years of my career as a cancer physician, anger started to well up inside of me. Why have we not found a cure to save Bill and his wife from such pain? Why haven’t cancer researchers, doctors, and pharma shared the knowledge they do have with one another so we can focus on our primary goal – curing cancer? Why are we not working together to make sure this never happens again?”
Every year, in the U.S. alone, over 600,000 people like Bill and their families have similar stories play out in offices and hospitals across the nation. Every day, we lose 400 more people to cancer than were lost in the daily death tolls of all the wars the U.S. has ever fought.
And yet, we have never been able to come together as a nation to find answers for people like Bill. There have been noble efforts and amazing advances by physicians, researchers, drug manufacturers, technology companies, laboratories, and other entities. We understand cancer better than we ever have before.
The problem is that as we understand cancer better, we have recognized that it is much more complicated than we thought. We need a lot of data to figure it out. The only way this will happen is if we unitedly collect and share the data that is necessary with everyone who has a piece of the puzzle. And with everyone who could make a difference. We can’t do things like we used to, we need to develop new ways of working together and helping each other.
We need to unite all to cure the one.
Sound familiar? Doesn’t the need for information, sharing of data, and innovative thinking remind us of what we need to conquer COVID-19?
I recently started an effort to build a national knowledge base that supports researchers, drug manufacturers, technology companies, laboratories, and others to collect and share the real-word, patient experience data needed to better fight cancer. It’s a new way of looking at patient information – one that emphasizes collecting the right data at the point of care and that uses a novel clinical trial, the Master Observational Trial (MOT).
The approach allows us to learn from thousands of patients with end-stage cancer in ways that currently are not happening. We’re going to make this data available to everyone – no silos. We’re going to share revenue with dedicated cancer physicians who are desperate to give patients with end-stage cancer some hope. We’re going to make sure it’s transparent for patients – so they know what is happening with their information.
COVID-19 has transformed the world in many ways. It has propelled considerable research, much of it collaborative, bringing stakeholders together to fight a common foe. If there’s any good to come from this devastating virus, it has shown that we must work together. I hope that physicians, researchers, and pharma will take a page from the COVID-19 experience. I hope we’ll learn from their example and work collectively to build the cancer database that is needed and can be shared with everyone so all can benefit. It doesn’t matter whether it’s COVID or cancer: We need to unite all to cure the one.
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