I hope to see many of the exciting agents presented this year become available and affordable for my patients. But when the miracle isn’t happening we have an obligation to talk it out and be candidly compassionate. We need to know when to put the pedal to the metal and when to hit the brake.
When I was a fellow there were about 50 antineoplastic agents. Now cancer.gov lists about 200. After reading all the updates from the 2016 American Society of Clinical Oncology (ASCO) Annual Meeting, I think there might be another 50 new agents!
Reading all the presentations from this year’s meeting is almost more than I can digest. Some of the news is astonishing: “novel first-in-class antibody can significantly extend survival.” Some is encouraging: “novel agent shows activity in 10 of 18 patients.” Other headlines are a bit vague: “fusion analysis can help guide patients through treatment options.”
Admittedly, I was not on site in Chicago, I have a hard time taking time off from the office. Who is going to take care of my peeps? Maybe all would be illuminated if I had heard the data in person, but even from the comfort of my office chair reading the daily updates, I find it inspiring that scientists and researchers and academics far more erudite than I have made such fantastic discoveries that will make life better or longer for our patients.
I wonder how patients currently dealing with cancer feel when they read about these findings. I find myself on an emotional rollercoaster going from reading about the breakthroughs to going to see a patient in a room with bulky, locally advanced triple-negative breast cancer in the rural cancer clinic where I now work. Gina-a deeply spiritual, incredibly kind, self-reliant African American woman I met 5 months ago-has endured every treatment we can think of trying to get control of her disease. She takes a long pause before even considering expressing disappointment or discomfort. Where is her breakthrough, dammit!?
Surely as patients and their families across the world read about the presentations from this year’s meeting, many must be asking, hoping, and praying that one of the spectacular new agents, mostly ending in –ab, will be the one that makes a difference for them. As oncologists, we want to deliver that lifesaving drug to make it all better for the patients we pour our hearts into.
And yet we still have to face incurable disease and dying patients every single day. We now have 200 agents to choose from, but are they as good as we think they are, or even as good as they are promoted?
Mayo Clinic Proceedingspublished a paper essentially calling out the US Food and Drug Administration for using surrogate endpoints when approving cancer drugs in place of real evidence to show that the drugs allow patients to live longer or better. It reminds me of a former colleague of mine who would give chemotherapy to patients on ventilators all the while assuring the families that “the tumor marker is decreasing”! A surrogate measure of effectiveness is not at all the same as an actual improvement in a patient’s survival or quality of life.
Even when they can show improved statistics, the standard has been set so low that close scrutiny can be very disappointing. Take a random drug ad I pulled showing “extended overall survival.” The survival improvement found on trial was actually only 6 weeks, and by 15 months all subjects in both treatment groups were deceased. The drug alone is about $6,000 a dose every 2 weeks.
I am not anti-chemotherapy. I have spent millions of dollars on patients without batting an eye when I think it is the right treatment. I am in awe of the drugs we have to offer. My point is that we have a lot of expensive substances at our fingertips and they have tremendous physical, psychological, and financial impact on the recipients. It is our duty to make certain we give patients as much information as we can before we click the orders in the EMR. Or as Rena Conti, PhD, pointed out in her poster presentation at ASCO, we need “more transparency regarding the costs of various regimens” to help patients “choose wisely.”
This is essentially the same conclusion reached in a comprehensive survey by CancerCare of over 3,000 individuals with cancer. Their conclusion, also presented at ASCO, was that patients are seeking more information in order to make decisions with their care team.
And yet a study at ASCO presented by Ronald Chen, MD, MPH, of the University of North Carolina Lineberger Comprehensive Cancer Center, analyzed claims from 2007 to 2014 looking at aggressive care in the last 30 days of life for cancer patients. Aggressive care was defined as intensive care unit (ICU) admission, emergency room visits, or treatment with chemotherapy or radiation. They looked at over 28,000 patients under age 65. They found 61% to 65% of these patients had a hospital admission in the last 30 days of life, 16% to 20% had ICU admission and only 14% to 18% had hospice services. Who says patients want to spend their final days in the hospital much less the ICU? How are these choices being made? Certainly not thoughtfully.
We all want what is best for our patients at every stage of their disease. I hope to see many of the exciting agents presented this year become available and affordable for my patients. But when the miracle isn’t happening we have an obligation to talk it out and be candidly compassionate. We need to know when to put the pedal to the metal and when to pump the brakes.