17 Years (and Counting) of Standing Up and Speaking Out for People Impacted by Cancer

As the calendar turns to 7.17.17 today, and I celebrate my 17th anniversary at the Cancer Support Community (yes, I am playing the lottery today!), I can’t help but reflect on the past 17 years and contemplate how the cancer patient experience has changed during that time.

When I joined the organization in 2000, 1,220,100 people were diagnosed with cancer and 552,200 died from the disease. In 2017, it is estimated that 1,688,780 people will be diagnosed with cancer and 600,920 are expected to die. As the numbers reveal, we are witnessing an increase in the incidence of the disease, but not a commensurate increase in deaths. We know that more people are being diagnosed with cancer, being cured from cancer, and living with the disease than ever before. We have witnessed dramatic advances in treatment and improvements in early detection. So while we all know people who have died from cancer and mourn those losses, we also all know people who have beat the disease and have survived or are living with it much like a chronic disease. And importantly, there has been an elevated dialogue in general about cancer and its impact – notably through efforts such as the Cancer Moonshot at the White House, the Biden Cancer Initiative, and Stand Up 2 Cancer along with mainstream media coverage of immunotherapy and other groundbreaking treatments. Cancer is no longer the “C word.”

I vividly remember when the 2008 Institute of Medicine report “Cancer Care for Whole Patient” was issued. The report stated clearly that “technology alone is not enough” in cancer treatment and that “it is not possible to deliver good-quality cancer care without using existing approaches, tools, and resources to address patients’ psychosocial health needs.” It summarized the wealth of evidence about the negative impact of unmet psychosocial needs as well as highlighted the positive effects of offering these services. The report further illustrated the point: “To ignore these factors while pouring billions of dollars into new technologies is like spending all one’s money on the latest model car and then not having the money left to buy the gas needed to make it run.”

Another seminal moment came in 2011 when the American College of Surgeons Commission on Cancer announced a new accreditation standard that required distress screening and referrals for psychosocial care. The Commission is a consortium of professional organizations that establishes cancer care standards and monitors quality of care at the more than 1,500 hospitals it accredits. This change would have wide reaching impact.

As I reflect on the past 17 years, I see these milestones were the vindication—the affirmation—that I and many of us advocating for the inclusion of psychosocial support in standard cancer care had sought after years of being perceived as soft science, as “nice but not necessary.” Coupled with the incremental progress we have made in protecting patients’ rights over the years and guaranteeing them access to care—regardless of things like pre-existing conditions or annual or lifetime insurance caps— I was feeling optimistic that we were making definite strides towards providing cancer patients with true comprehensive cancer care.

And yet, today, as I look towards the future, I find myself heartbroken that we are potentially going backwards when it comes to access to and affordability of cancer care. I am astonished that our senators are considering chipping away at those rights and making perhaps the most difficult time in a person’s life all the more challenging and stressful. Too many people are already falling through cracks—a cancer diagnosis does not have to equal the financial devastation of an individual or a family. And we must bring a measure of compassion and empathy and human kindness to these conversations and remember that these are not numbers we are talking about. These are not just statistics and CBO scores—these are human beings—our mothers, our fathers, our brothers, our sisters.

Before I joined the Cancer Support Community, I worked in the world of HIV/AIDS where people were known not as advocates, but as activists. It was a time when people chained themselves to the gates of the FDA to demand better treatment, better access, and affordability. Perhaps the conversations around healthcare have gotten a little too polite and complacent in recent years. Perhaps we all need to get a little louder and demand that cancer patients have access to affordable and comprehensive high-quality cancer care.

I have been a passionate advocate for people facing a cancer diagnosis for 17 years. I don’t regret a moment of the hard and intense work. I am heartened and grateful for the progress that has been made, but also find myself becoming more and more impatient about these issues with each passing year. I invite others to stand with me and speak up forcefully as we look for better solutions to these challenges, as we work to ensure access and affordability for all, and as we rededicate ourselves to a system worthy of our nation’s values and principles. Those that we serve today and will serve tomorrow and into the future deserve no less.

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