A Special Report from the National Cancer Institute
by Norman E. Sharpless, MD, director of the National Cancer Institute
In the 26 years that the National Cancer Institute has provided an annual report for Coping®, no year has been quite like the current one. For NCI, navigating a global pandemic has been an incredible and unique challenge. In addition, we have been faced with heartbreaking evidence of ongoing racial inequality in the U.S. As we continue to respond to COVID-19, especially as it affects people with cancer and cancer research, we have renewed our commitment to overcoming health disparities and improving diversity in the research workforce.
SARS-CoV-2, a novel coronavirus, and COVID-19, the disease it causes, have resulted in tremendous upheaval, uncertainty, and anxiety for all of us. Many activities that we would normally take for granted have come to a stop or have been altered. But cancer never stops, nor do the needs of people living with cancer, whose stress may be heightened during this period. To help meet the information needs of people with cancer, NCI created a page on its website (cancer.gov/coronavirus) with updates and resources tailored to these difficult times.
NCI, like many government agencies and research institutions, has been intensely involved in contributing to worldwide efforts to better understand and mitigate COVID-19. Not only do we consider it our moral obligation as public servants and human beings to do so, but NCI also brings to the effort considerable expertise in areas such as virology and antibody research.
NCI has acted quickly to respond to COVID-19, but our priority still is – and always will be – advancing cancer research and care. At the same time, it has been a delicate balancing act to move cancer science forward and administer care while simultaneously trying to keep patients, many of whom are immunosuppressed, and healthcare and research staff safe and protected. Fortunately, navigating challenges in a sea of uncertainty is something NCI and those of us who provide medical care are very familiar with.
Taking Steps to Sustain Cancer Research Momentum
In the last three decades, we have seen strong progress against cancer, thanks to improvements in prevention, screening, diagnosis, and treatment. NCI has taken steps to minimize the disruptions caused by the pandemic in laboratories and hospitals to keep the nation’s cancer research enterprise operating to the fullest extent possible.
In the case of NCI-funded clinical trials, we’ve implemented changes to allow participants to conduct follow-up visits with a doctor in their community, rather than having to travel to the study site, which often can be hundreds of miles away. Trial researchers are also taking greater advantage of telemedicine options to consult with study participants. We have been emphasizing the importance of ongoing clinical trial operations, particularly in situations where those trials provide access to potentially life-saving therapies or when there are no other treatment options available.
I am hopeful that the real-world data we are gathering on the use of telemedicine during the pandemic will offer insights that can improve clinical practice far beyond the current crisis.
Despite physical distancing and facility closures, important cancer research continues, including data analysis, the publication of scientific papers, new research collaborations, and virtual conferences that allow researchers and healthcare providers to learn and share insights.
Research on Cancer and COVID-19
NCI has moved rapidly to investigate the interplay between cancer and SARS-CoV-2. As an example, NCI has launched the NCI COVID-19 in Cancer Patients Study (NCCAPS). Working through the NCI clinical trials networks and NCI-designated Cancer Centers, we plan to enroll more than 2,000 people of all ages and racial and ethnic groups nationwide. After just a few weeks, more than 440 sites were set to participate. The study should help to answer questions such as: Does COVID-19 change how cancer grows or spreads? Are people with certain cancer types more severely affected by COVID-19? Does cancer treatment affect people’s ability to recover from COVID-19? Findings from this study will inform our understanding of COVID-19’s impact on people with cancer, as well as cancer’s impact on the course of COVID-19, and how both can be best managed.
Many NCI-designated Cancer Centers, on their own or in collaboration with other cancer centers, have also initiated studies involving cancer patients with COVID-19. In addition, the COVID-19 and Cancer Consortium, a group of more than 80 cancer centers and organizations, was created to expedite the collection of clinical data on people with cancer who have been infected with SARS-CoV-2. What is learned may have practice-changing implications for cancer care, so there is an urgent need to share data.
Ongoing Survivorship Research
Even as NCI and the rest of the cancer research community have responded quickly to the pandemic, we have maintained our commitment to ongoing research, including in cancer survivorship. That work includes finding ways to better address the physical, psychological, and economic effects of cancer and its treatment for all survivors – from young children to older adults – and their families. This work is overseen by NCI’s Office of Cancer Survivorship, established nearly a quarter-century ago and now headed by Dr. Emily Tonorezos.
Following are just a few examples of current NCI-supported research that I believe can have an important and lasting impact on the experience of cancer survivors:
Longer-term follow-up and care
As the population of cancer survivors aged 65 and over has grown, we recognize that there is much more to do to improve the quality of a longer post-treatment life. Many survivors want to continue in their careers beyond the age of 65. The ways in which cancer affects survivors’ ability to work is an understudied area. Loss of a job, or even reduced work hours can cause financial hardship and loss of employer-subsidized group health insurance. NCI has made it a research priority to measure, understand, and address these and related issues.
Another area of study deals with long-term survivors’ concerns about lack of communication, collaboration, and coordination among their oncology and non-oncology healthcare providers, particularly during transition points, such as from active treatment to continuing care. NCI supports research that examines better ways to design team-based cancer care across different healthcare specialties and settings to improve patient outcomes and quality of follow-up care.
Cancer survivors often experience unpleasant side effects, such as nausea and peripheral neuropathy, that lower their quality of life and their likelihood of continuing their treatments. Work is being done to develop better tools to help survivors report intolerable side effects so researchers can have a clearer understanding of these problems and develop ways to prevent and manage them. This work on patient-reported outcomes includes studies to ensure that tools for reporting symptoms include culturally sensitive language appropriate for diverse populations.
As the population of cancer survivors aged 65 and over has grown, we recognize that there is much more to do to improve the quality of a longer post-treatment life.
Efforts to increase physical activity
Only a minority of survivors exercise regularly, despite evidence that doing so can improve anxiety, depression, fatigue, physical function, and overall quality of life, and in the case of some cancers (such as breast, colon, and prostate), help extend life. Research is being conducted that examines whether exercise can prevent or improve other treatment-related side effects, such as heart damage and peripheral neuropathy, and have a beneficial effect on other cancers, as well. Although the evidence is there, more work is needed to gain a clearer understanding of how to design more effective ways to encourage survivors to participate in regular physical activity.
Telemedicine to manage care
There is no ignoring the fact that this pandemic has caused a massive disruption. And yet, there has also been an unexpected silver lining, which we have been able to translate into a research opportunity. We are already hearing anecdotally that many survivors prefer telemedicine – virtual check-ins, online doctor visits, and remote patient management. Some may even want to continue with these options in the post-pandemic future for some aspects of their care. This rapid adoption of telemedicine, spurred by the pandemic, also presents an excellent opportunity for researchers to learn more about the impact of telemedicine approaches on patient care and how it can be most effectively used and expanded into routine healthcare, going forward. I am hopeful that the real-world data we are gathering on the use of telemedicine during the pandemic will offer insights that can improve clinical practice far beyond the current crisis.
Stark differences in rates of cancer occurrence and life expectancy exist between urban and rural areas, and these disparities are on the rise. To reduce these disparities, NCI has been supporting more research on how to improve the quality of cancer care related to diagnosis, treatment, and follow-up in low-income rural and underserved populations. We have been expanding the availability of clinical trials and conducting research on ways to provide care in smaller communities, enabling survivors in these areas to receive high-quality care close to home.
Surviving Challenging Times
As a practicing oncologist, I have witnessed the physical, as well as emotional, toll exacted by cancer. Add a pandemic to the equation, and the challenges increase exponentially. At the same time, I have also seen the astounding fortitude and resilience that people diagnosed with cancer summon every day. That strength and courage propels me and my equally dedicated colleagues at NCI to work even harder every day to find more effective ways to reduce the pain and suffering of the disease.
Cancer survivors, I salute you and I thank you for your perseverance and support. Together, we will continue to make progress.
Since 1994, the National Cancer Institute has written an exclusive annual report for Coping’s July/August Celebration issue.
This article was published in Coping® with Cancer magazine, July/August 2020.