The aftermath of cancer and its treatment is life-long. The effects touch not only the patient but their families and communities as well. And the scale at which cancer now exists – one out of every two men and women in America will receive a diagnosis eventually – demands that we take a hard look at how it is affecting the people of this nation. Current events, including an impending Presidential campaign, a national cancer drug shortage and the uncertain future of health care reform, contribute to making it a topic of the greatest urgency.
I began my career as an oncologist 40 years ago, around the time President Nixon declared his War on Cancer, when we were first successfully treating patients for several malignancies. During much of the subsequent 40 years, we have largely focused on cancer as a disease – its basic biology, and what it takes to eradicate it. Much less attention has been paid to the needs of the individual patient, and in particular, to the effects of our treatment on their quality of life long after the last dose of chemotherapy. Those effects can include infertility, organ damage (such as lung and kidney), bankruptcy, un-insurability, job loss, and lasting physical and emotional trauma.
Survivorship as a field of study and service was born to better understand these effects, and to develop strategies to mitigate them, while not reducing the cancer for cure. It has been championed by one survivor in particular, Lance Armstrong, who used his own experience to highlight the benefits of a patient’s active role in their care, and the importance of focusing on quality of life after treatment. Today, organizations like the Lance Armstrong Foundation, the Patient Advocate Foundation, and the Navigate Cancer Foundation serve survivors throughout the U.S. struggling with the often heavy physical, mental and practical burdens left by cancer. And they do it for free.
Events taking place this year will have a profound effect on people diagnosed with cancer. Our next President will set the bar for funding for the National Institutes of Health and the National Cancer Institute. He will have the ability to introduce policies and measures that benefit patients and their families. Our Supreme Court is expected to render a decision this June about the continuation of healthcare reforms that in many cases, have been exceedingly beneficial to survivors. Adult children can now stay on their parents’ insurance plan until age 26, for example. For a pediatric cancer survivor, that change is monumental.
Also, this nation is in the grips of a profound drug shortage crisis that is not receiving nearly enough attention. We are in danger of or have already run out of some of the most basic and affordable cancer drugs. The causes are many – regulatory hurdles, supply shortages, manufacturing difficulties – but the consequences are increasingly severe: treatment delays, drug substitutions leading to less efficacious treatment and reduced chance for cure, and in the worst cases, patients simply turned away causing at least 15 deaths.
We must hold our leaders accountable for these issues. An election year provides us with opportunities to raise issues that are important to the American people. Regardless of our party affiliation, we must acknowledge that the status quo in healthcare is leaving many survivors and their families out in the cold. Making our local, state and national leaders aware that we demand progress is the right thing to do and countless cancer patients and their families are counting on us to speak out.
Lawrence N Shulman, MD
Chief Medical Officer and Senior VP for Medical Affairs
Dana-Farber Cancer Institute