At that time, in 2003, the answer was 60%. I was appalled that fewer than half of us fellows, physicians embarking on a subspecialty training program to devote our careers to treating people with cancer, got the answer correct, with estimates of cancer survivorship ranging as low as 30%. That was 2 years before the 2005 landmark Institute of Medicine (IOM) report, "From Cancer Patient to Cancer Survivor: Lost in Transition."
From the founding of the National Coalition for Cancer Survivorship (NCCS) in 1986, the advocacy-led movement that insisted we stop calling people cancer "victims," but instead cancer survivors; to the 2005 IOM Lost in Transition report; to the current Centers for Medicare and Medicaid Services (CMS) Oncology Care Model, Dr. Ganz outlined the challenges and opportunities in delivering high-quality survivorship care in a cancer care system in crisis. She also delivered a moving tribute to the memory of Ellen Stovall, who she called the "leading light and champion" of survivorship care, and reminded us that cancer survivorship is a condition of its own.
Here are 8 takeaway updates from the Symposium:
1.6 million people per year are diagnosed with cancer in the U.S. By 2022, there will be at least 18 million people in the U.S. who are cancer survivors. Yet cancer treatment usually occurs in isolation from primary health care delivery, as Dr. Ganz pointed out in her lecture. Historically this has led to ad hoc follow up care plans, and oncologists' focus on surveillance for cancer recurrence, instead of a focus on health promotion. Yet many (if not most) of people being diagnosed with cancer in the U.S will die of something other than cancer: with that #1 "something other" being heart disease.
Dr. Julia Rowland, discussant in Oral Abstract Session B, outlined these trends, putting in context that in 1971, when Nixon declared the "War on Cancer," there were only 3 million cancer survivors in the U.S., and < 50% would be expected to live 5 years or more. Contrast that with our current 16 million survivors and 70% expected survivor rate. As she put it, "health promotion after cancer matters."
A paradox of cancer survivorship care is that the increase in the number of cancer survivors coincides with the rapid rise in cancer treatment costs since the 1990s. Healthcare trends affecting financial hardship include an increase in high deductible plans, an increase in patient cost-sharing (among insured patients), an increase in the uninsured, and an increase in "specialty tier" medications (for example, a 30% out-of-pocket cost for a specialty tier cancer medication costing 0,000 per year means a ,000 per year out-of-pocket cost solely for cancer medication. A 0,000/year cancer medication (yes, that is a real-world number) would translate to 0,000/year out-of-pocket cost).
The Affordable Care Act (ACA) benefited cancer survivors in many ways, including providing out-of-pocket caps, allowing young adults to stay on their parents' insurance until the age of 26 (dependent coverage expansion), elimination of annual and lifetime coverage limits, elimination of pre-existing condition denials, and increased coverage of clinical trial participation.
By 2025, the number of cancer survivors is anticipated to outweigh the supply of oncologists. The incidence of cancer in those over age 65 has risen by 67%. Yet patients over age 65 represent only roughly 10% of people in clinical trials. We cannot afford to not better study this segment of the population. In the Keynote Lecture, Dr. Arti Hurria spoke on Survivorship Care for the Aging Population, and the need to better understand how cancer therapies might lead to a premature aging syndrome that significantly affects quality of life in the elderly treated for cancer.
The advent of newer cancer therapies such as the immune checkpoint inhibitors, as well as oral targeted agents, has led to a new kind of cancer survivor, the "on-treatment responders." These therapies may lead to remission, but ongoing chronic treatments. These survivors and their families are facing a long-term unknown.
In 2008, the IOM report "Cancer Care for the Whole Patient" outlined the standard of care for psychosocial health for people with cancer. From the depression and cognitive effects of cancer therapies, to fear of cancer recurrence, to risk of suicide, speakers at the symposium reminded us that there is an unmet need for better integrating mental health care into medical survivorship care.
While cancer is the #2 cause of death in the U.S., suicide remains the #10 cause of death. Cancer increases the risk of suicide overall by 50%, with increased rates in men over women, and the highest incidences of suicide in cancer seen in pancreatic cancer, and head and neck cancers. A struggle with functionality post-cancer treatment is another risk factor, and was identified as an unmet pyschosocial need in cancer survivors.
Yes, these are all still true, and more important than ever for cancer survivors.
The best diet for weight loss is still calorie restricted, for men an approximate target is 1500-1800 calories per day, and for women, 1200-1500 calories per day. There is still no evidence for dietary supplements, and the best evidence still shows that it is best to meet vitamin and mineral needs through diet, not supplements. What works: a brisk walk 1 hour per day, and decreasing screen time. The elderly should aim to increase protein to avoid loss of muscle while losing weight. Digital health tools can help (i.e. FitBit, apps to track calories and exercise, etc).
Dr. Graham Warren, in General Session 3: Health Promotion After Cancer -- How to Move the Needle, reminded us of the cost of those who do not quit and thus fail first-line cancer treatment due to ongoing tobacco smoking: 3.4 billion dollars per year in the U.S..
The basics of an SCP include 2 parts: (1) a treatment summary, and (2) a follow-up care plan.
Dr. Shulman (and other speakers) reminded the audience that from the time of the 2005 IOM report and recommendation, nothing was happening to move the needle for survivorship care, until the 2016 COC standards (version 3.3) mandated the SCP as part of COC accreditation. However, he acknowledged that in some circumstances the focus seems to have been lost -- that the SCP is a tool to address unmet needs of survivors about survivorship care, and that SCPs do not replace that conversation. He stood by the COC requirement for a written SCP, because the COC standard is "the only action that has gotten survivorship care on the radar."
The SCP is the tool that is supposed to help transition survivorship care to the PCP. Yet SCP's have to be accessible, relevant, and functional, in order to be of any use to the primary care provider. They should be simple and confined to 1 page. They should be easy to access and view in the EMR, and they should help clarify the role of the PCP in survivorship care.
We need smarter follow-up, and to empower our patients. We need to leverage technology to help achieve this.
As compared to my entering oncology fellowship class fifteen years ago, oncologists have come a long way in recognizing and addressing survivorship care. I was heartened by the number of other providers at the symposium invested in survivorship care -- from allied care providers to internists to family medicine practitioners to social workers, dieticians, physical therapists, and others. As we move forward, let's hope the systems of care do as well, so that we are provided with the resources that will be needed for success.
Did you attend the Symposium? Add your comments below.
published first at thehopefulcancerdoc.com