WHEN DEBORAH MAYER, PH.D., RN, AOCN, FAAN, was a young oncology nurse, she met a patient with sarcoma who clearly expressed her expectations for care.
“I expect my doctor to try to cure me,” the patient told Mayer, who is now a member of the UNC Lineberger Comprehensive Cancer Center and a professor in the School of Nursing at UNC Chapel Hill. “But if nobody has asked me how I slept or when I last moved my bowels, then the time you’re buying me is not worth living.”
Mayer took that conversation as a call to action, never forgetting the importance of symptom management.
Recently, she relied on her passion for and knowledge about the subject when she sat on former Vice President Joe Biden’s Blue Ribbon Panel that helped shape the Moonshot initiative, a national endeavor to make 10 years’ worth of progress in cancer prevention, diagnosis and treatment within half that time. The panel helped inform Biden’s task force and the National Cancer Advisory Board about what should be included in the Moonshot.
Mayer, who served on the panel’s Implementation Science Working Group, offered a glimpse into the process of planning and rolling out the Moonshot in a talk at the 42nd Annual Congress of the Oncology Nursing Society, held May 4 to 7 in Denver.
Overall, Mayer said she is thrilled about the energy the initiative has brought to the issue of cancer prevention, research and care. “Vice President Biden unleashed something — excitement and enthusiasm — by calling on us to ask ourselves the questions we were always afraid to ask,” she said.
The biggest challenge panel members faced when they met from April through August of 2016 was the charge to focus only on initiatives that would lead to accelerated progress, Mayer said.
Her working group, one of seven, contributed a recommendation aimed at boosting the use of cancer prevention and screening strategies, but, due to Biden’s charge, had to choose some areas in need of attention over others.
“We did not include obesity,” which is a risk factor for many cancers but can’t be widely diminished without “20 to 30 years of interventions and population studies,” Mayer said. “We also took integrative therapies off the table, instead focusing on what would bring us the biggest return on the investment.”
Ultimately, their recommendation was to advance the implementation of evidence-based cancer prevention and screening interventions across the country in three target areas: human papillomavirus (HPV) vaccination, colorectal cancer (CRC) screening and tobacco control. Beyond reducing cancer risk overall, the better implementation of these preventive measures will reduce health disparities between various populations of patients, the working group agreed.
“This would dramatically accelerate progress in diminishing the cancer burden in the United States by averting an estimated 389,900 new cancer cases and 318,500 cancer deaths annually,” the Blue Ribbon Panel’s report states.
Mayer and her group also considered issues affecting the quality of life of people with cancer, specifically in the areas of palliative care, end of life, survivorship and management of symptoms.
Unable to choose just one of those areas, Mayer said, members combined them under a common umbrella and “elevated the recommendation to symptom management and how to study and deliver it” at every stage of the journey.
The crux of the recommendation is to consolidate guidelines for the treatment of physical complaints that arise from cancer or its treatments, resulting in one definitive document for each symptom that is supported by all relevant medical societies. Then, coordination with software vendors would allow guidelines to pop up at the touch of a button for health care providers, who could click to turn them into standing orders for patients. This would save time for clinicians and make it more likely that they would treat according to guidelines, Mayer said.
The recommendation also suggests finding ways for health care practitioners to “close the loop” after asking patients to report their symptoms, meaning that the clinicians will be prompted to check in later to monitor and treat these issues. Ultimately, the seven working groups came up with 10 recommendations that overlapped with each other. They also suggested:
Establishing a network through which patients can contribute their tumor information to help researchers understand which treatments work, and in whom;
Building a scientific network dedicated to learning why immunotherapy works for some patients with cancer but not for others;
Learning what makes cancers become resistant to treatment and how to overcome that resistance;
Creating a national cancer data ecosystem to which researchers, clinicians and patients can contribute;
Gaining a deeper understanding of fusion oncoproteins in pediatric cancers, which are drivers of the disease caused by chromosome translocations, and using new preclinical models to develop targeted drugs against them;
Studying past patient response to standard cancer treatments to predict future outcomes;
Developing dynamic 3-D maps that can trace the evolution of genetic lesions and cellular interactions in tumors as they grow; and
Crafting new technologies that will characterize cancerous tumors and test the effects of various therapies on them.
Ultimately, Biden’s task force came up with five broad goals: catalyzing new scientific breakthroughs, unleashing the power of data, accelerating the process of getting new treatments to patients, strengthening prevention and diagnosis, and improving patient access and care. Numerous specific tasks scheduled for years one and two of the Moonshot are listed in the task force’s Oct. 17, 2016, report (https://tinyurl.com/mdjz5e4).
Among many others, these include expediting researchers’ access to cancer compounds; a variety of specific initiatives aimed at enhancing precision medicine; the establishment of a fast-track review process for cancer-related patents; the boosting of HPV vaccination rates; and the improvement of cancer survivorship through art.
Overall, the program’s goals are expected to stimulate cooperation among 20 government offices and more than 70 organizations in the private sector.
PASSAGE AND ROLLOUT
Funding for the Moonshot was approved in the 21st Century Cures Act, passed on Dec. 7, 2016, and enacted by President Barack Obama on Dec. 13, 2016. A total of $1.8 billion designated for the Moonshot has been allocated over seven years.
Money has been promised for fiscal years 2017 and 2018 — $300 million and $500 million, respectively — while funding is recommended but not guaranteed for each of the five years after that, Mayer said. All the Moonshot funding will be dispersed to the National Cancer Institute (NCI), and is above and beyond that agency’s regular budget.
By creating budgets for various tasks associated with the Moonshot, the NCI will head the translation of the initiative’s recommendations into action, explained the agency’s Nonniekaye Shelburne, CRNP, M.S., AOCN, who was on hand for Mayer’s talk.
Following the passage of a bill like the 21st Century Cures Act, Shelburne said, it takes five or six months for the NCI to get the appropriations that have been approved. In the meantime, she said, “We developed implementation groups in the NCI across divisions, and created working groups to create funding announcements, supplements and contracts to fulfill the recommendations.”
It will likely take between 40 and 50 funding initiatives to execute the Blue Ribbon Panel’s 10 recommendations, Shelburne said. She added that some Moonshot funding will be spent on existing initiatives and some on new ones.
With a new presidential administration in place since the Moonshot was announced, the future of the initiative is not entirely clear, but Mayer said momentum has accumulated to keep it going.
The Moonshot will be supported by research grants funded not only out of the 21st Century Cures appropriations, but also out of the NCI’s regular budget, Mayer said. In fact, Shelburne noted that nurses writing grants that fit into Moonshot initiatives should mention that in their paperwork, which may secure them a better chance of receiving funding when budgets are tight.
Mayer added that Biden’s initial work engaged Americans in the Moonshot idea, and that, since leaving office, he has started a foundation dedicated to continuing the effort. The goals of the Biden Foundation, headquartered in Washington, D.C., are to “protect and advance the rights and opportunities of all people through educational programming and public policy analysis.” The foundation has seven areas of focus, including The Cancer Initiative.
Through that initiative, Biden “will continue his work to inject a sense of urgency into our cancer research enterprise and to reimagine how the government, academia, nonprofits and the private sector can better organize their resources and systems to collaborate to take on cancer,” the foundation’s website states.
Proposed federal changes to health care policy, however, could endanger Moonshot initiatives, Mayer said. “I don’t care what your political beliefs are, but as oncology nurses, you have to believe in having a clause in health insurance (saying that people can’t be excluded from plans because of pre-existing conditions),” Mayer said. “If patients are excluded for these reasons, we have condemned them to a life of being stuck wherever they are and maybe still not having enough access to care.”
She added that, “If we don’t ensure that HPV vaccines, colonoscopies and mammograms are covered — and that Planned Parenthood, which provides health care to underserved women, is funded — we are not advocating for our cancer populations, and we are not meeting our promises of the Moonshot.”
Mayer and Alec Stone, M.A., M.P.A., health policy director for ONS, agreed that many legislators have been touched by cancer, and that, as a result, they will be especially open to hearing from oncology nurses and other experts about these issues.
“Now, in these most urgent of times, let officials know the impact these policy changes will have on their lives,” Stone said. “Cancer is at the top of the list regarding what resonates in Washington. Your voice will be paramount in this discussion.”