The Coronavirus Disease 2019 (COVID-19) pandemic has disrupted the everyday lives of billions of people, exhausted the health care infrastructure and workforce, upended societal norms, and shattered economies worldwide.
Since the outbreak of the pandemic in December 2019, one in six Americans has been diagnosed with the disease and nearly one million people in the U.S. have died from it. The damaging impact of the pandemic on the lives of older adults, racial and ethnic minorities and other medically underserved populations, and individuals with certain preexisting conditions, such as patients with cancer, has been disproportionately high and multifaceted.
As the first and largest professional organization in the world with a steadfast mission to prevent and cure all cancers, the American Association for Cancer Research (AACR) is dedicated to increasing public understanding of cancer and the important role of medical research in saving lives. The AACR Report on the Impact of COVID-19 on Cancer Research and Patient Care is one of AACR’s several initiatives to fully understand and mitigate the pandemic’s impact on the cancer research and care continuum and describes the many ways by which COVID-19 has affected cancer science and medicine. This report highlights how cancer researchers responded to the significant challenges posed by COVID-19 and documents lessons learned from the pandemic that can be implemented to accelerate advances in cancer research and markedly improve patient care in the future. The impact of the pandemic on patients with cancer is underscored through compelling personal experiences of the courageous individuals who shared their stories with AACR.
AACR is committed to advocating for increased annual federal funding to government entities that drive progress against cancer and improve public health, in particular, the National Institutes of Health (NIH), National Cancer Institute (NCI), U.S. Food and Drug Administration (FDA), and Centers for Disease Control and Prevention (CDC). This report underscores the urgent and critical need for additional funding for medical research to alleviate the negative effects of the pandemic on cancer science and medicine and to maintain positive momentum against cancer.
Understanding the COVID-19 Pandemic
COVID-19 was first reported in December 2019 in Wuhan, China, as pneumonia with unknown origins. Soon after, a novel coronavirus—severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2)— was identified as the cause, and the disease was designated COVID-19 and declared a pandemic by the World Health Organization (WHO). Since then, the toll of the pandemic has been devastating, with more than 5.4 million deaths and more than 289 million cases worldwide and the largest drop in life expectancy since World War II in just over two years.
SARS-CoV-2 belongs to a large family of coronaviruses that are mostly found in birds and small mammals but have occasionally been known to infect humans, including three that have been responsible for the deadly global outbreaks of severe acute respiratory syndrome (SARS) in 2002-2004, Middle East respiratory syndrome (MERS) in 2012, and COVID-19. Many variants of SARS-CoV-2 including the most recent and rapidly spreading Omicron, have emerged since the onset of COVID-19. SARS-CoV-2 infects by attaching to the ACE2 protein that is found on the surface of certain human cells in the nasal passages, lungs, and gastrointestinal tract, among other organs. This may explain the vast array of symptoms that are experienced by patients with COVID-19, but the exact mechanism(s) by which the virus affects multiple organs is an area of active research.
COVID-19 predominantly spreads when an infected person coughs, sneezes, or talks, releasing droplets that contain the virus into the air, which infect nearby individuals who are in close contact with the infected person. Severe COVID-19 causes pneumonia and acute respiratory distress syndrome (ARDS), which are associated with difficulty in breathing and low blood oxygen levels. If unchecked, ARDS can progress to respiratory failure, which is the cause of death in many fatal cases. COVID-19 can affect many organs of the body in addition to lungs.
The immune system plays a crucial role in fighting COVID-19 infection by releasing antibodies that restrict the ability of SARS-CoV-2 to infect cells, as well as by killing any cells that have already been infected by the virus. Thus, individuals with weakened or compromised immune systems—older adults, males, and individuals of any age with certain underlying medical conditions including cancer, such as Julie Campbell and Rachel Orth—are particularly at an increased risk for severe COVID-19 illness. Beyond underlying health conditions, modifiable risk factors such as obesity and smoking, which are also linked to diagnoses of cancer, increase the risk for severe COVID-19.
Individuals from racial and ethnic minorities and other medically underserved populations are disproportionately shouldering the burden of the pandemic because of many of the same structural and systemic inequities that cause cancer health disparities. It is pivotal that all stakeholders come together to address these injustices and ensure that all segments of the U.S. population have equitable access to quality health care.
FDA has approved or authorized three vaccines against COVID-19. COVID-19 vaccines are currently widely available for all individuals age 5 and older, and 62 percent of the U.S. population has been fully vaccinated as of January 1, 2022. The vaccines are safe and effective and reduce the risk of severe illness from COVID-19. In addition, FDA has approved or authorized several treatments for the management of patients with COVID-19, and there are numerous additional agents that are being evaluated in clinical studies.
Contributions of Cancer Researchers to Combating COVID-19
Decades of investment in cutting-edge cancer research have led to major breakthroughs against cancer and have uniquely positioned cancer scientists to respond to the many challenges posed by COVID-19. Many cancer researchers and physicians provided their extensive expertise in genetics, immunology, and drug development to investigate COVID-19 biology and assist in developing vaccines and therapeutics. For example, NCI unified its national network of serology centers, initially established to standardize human papillomavirus antibody testing, and created the Serological Sciences Network to support research on SARS-CoV-2 immunology and to increase the nation’s serological testing capacity. Research from this network has uncovered important insights into the mechanisms of immune response to COVID-19. Similarly, decades of research into mRNA vaccines and cancer immunotherapy paved the way for the development of SARS-CoV-2 vaccines at an unprecedented speed. Researchers have also drawn knowledge from cancer biology to investigate the mechanism by which SARS-CoV-2 enters the host cell and the immune response to COVID-19.
The tremendous success of the COVID-19 vaccines has renewed enthusiasm for mRNA-based cancer immunotherapies, and many cancer scientists believe that the next wave of breakthroughs in mRNA technologies will revolutionize the landscape of cancer vaccines.
Impact of COVID-19 on Cancer Science and Medicine
COVID-19 has interrupted all aspects of the cancer research and care continuum. Certain patients with cancer, who have a weakened immune system because of their cancer and/or the treatment, are at a significantly higher risk of COVID-19 infection and severe disease. Among patients with cancer, individuals with hematologic malignancies such as Larry Saltzman, patients with lung cancer, and those on active anticancer treatments are especially vulnerable. Based on current knowledge, the most significant treatment-related risk factors are certain drugs that alter the function of normal B cells, which make infection-fighting antibodies. Examples of such drugs include immunotherapies such as CAR T cells; molecularly targeted therapies directed against proteins, such as CD20, found on the surface of B cells; inhibitors of proteins important for B-cell function; and corticosteroids.
COVID-19 vaccines are effective in most patients with cancer, with few to no side effects. With a wider availability of highly effective vaccines against COVID-19, getting vaccinated is the first line of defense against SARS-CoV-2 infection. Findings from a large study showed that patients with cancer had a 58 percent less chance of SARS-CoV-2 infection after receiving the second dose of one of the mRNA vaccines against COVID-19. In addition, CDC recommends that patients with cancer continue to exercise all preventive measures, including wearing a mask, social distancing, frequently washing hands, avoiding crowded gatherings, and minimizing non-essential travel. However, it is important to note that patients with certain types of blood cancers and/or those receiving specific types of anticancer treatments respond to the vaccines to a lesser extent and remain vulnerable to SARS-CoV-2 infections and complications from COVID-19. These patients should exercise additional care and discuss with their health care provider teams the best time to get vaccinated during their experience with cancer and whether additional doses are beneficial. A close consultation with a health care provider team is also an effective way for patients with cancer, their caregivers, and survivors of cancer to avoid COVID-19-related misinformation.
The pandemic has caused serious interruptions across the cancer care continuum. Preventive measures to contain the pandemic, as well as the reduced access to health care systems overwhelmed by patients with COVID-19, have resulted in a sharp decline in cancer screening. For example, there was an 87 percent decline in breast cancer screening in April 2020 compared to the average for the same month over the previous five years. Following delayed cancer screening, many individuals with cancer, such as Wenora Johnson and Senator Amy Klobuchar, are being diagnosed with precancerous lesions and early-stage cancers that could have been detected sooner if their routine cancer screenings had taken place as usually scheduled. Experts fear that missed cancer screenings during the pandemic will potentially lead to an increase in advanced-stage cancer diagnoses in the coming years and may result in an increase in cancer-related mortality. Effective strategies to raise awareness of the importance of preventive health care are critical to alleviate the potential impact of delayed screening on cancer-related health outcomes.
The pandemic also resulted in modified treatment regimens for many patients with cancer, such as Federico de Armas Heinzen and Allyson Pile, who were unable to travel to health care facilities because of the preventive measures necessitated by the pandemic. Others had to delay or postpone their cancer treatment. Furthermore, evidence is accruing that the mental and physical health of patients with cancer, their caregivers, and cancer survivors was negatively affected by pandemic-related social isolation and financial stress, as well as by concerns about timely access to cancer treatments and disease recurrence or cancellation of cancer treatments. These concerns may be heightened among adolescent and young adult patients with cancer, such as Rachel Orth and Allyson Pile, who face a unique set of challenges from cancer diagnosis and treatment, including long-term cancer care along with prolonged monitoring for disease recurrence or long-term complications from cancer treatments.
There are also concerns that the pandemic may exacerbate cancer health disparities. All stakeholders must make concerted efforts to learn from and address disparities exposed by the COVID-19 pandemic and use this knowledge to eliminate all health disparities, including disparities experienced by patients with cancer. As the cancer research community recovers from the COVID-19 pandemic, it is more important than ever to invest in cancer health disparities research, which includes community outreach, education, and engagement efforts.
COVID-19 led to closures of research laboratories; interrupted clinical trials; negatively impacted career development opportunities for the science, technology, engineering, and mathematics (STEM) workforce, especially for women and minority early-stage investigators; and caused substantial burnout among health care workers. A recent AACR survey of cancer researchers found that 87 percent of the respondents experienced lost productivity and 61 percent indicated that they missed cancer advancement opportunities due to the pandemic. Another concerning aspect is the limited availability or lack of job opportunities for early-stage investigators as academic institutions face unprecedented financial challenges because of the pandemic. There is an urgent need for the necessary funding, mentorship, and support to prevent talented scientists from exiting the cancer workforce and to maintain the momentum of impressive progress against cancer.
Future of Cancer Research and Patient Care Beyond COVID-19
Despite many adverse effects of the pandemic on the cancer care continuum, some of the lessons learned from COVID-19 have the potential to help improve cancer research and patient care as we recover from this extraordinary public health crisis. The necessary preventive measures to halt the spread of COVID-19 accelerated the adoption of telemedicine—the delivery of health care from a distance using electronic information and technology, such as computers and the Internet—across the cancer care continuum. In July 2021, the use of telemedicine for health care needs was 38 times higher than before the pandemic. A nationwide poll revealed that most Americans welcomed the expansion of telehealth, and 43 percent of the telehealth users said they want to continue using telehealth services after the pandemic has ended. Moving forward, implementing telehealth for routine care needs of patients with cancer offers a blueprint for broader and more permanent implementation of telemedicine, with the potential to reduce physician burnout and improve patient care.
The pandemic also necessitated changes to the conduct of clinical trials—such as the use of electronic consent to clinical trial participation and the shipment of experimental anticancer therapeutics to patients’ residences—to ensure the continuity of lifesaving clinical studies. The regulatory changes to the design of clinical trials offer a path forward for patient care that is patient-focused and decentralized and have the potential to increase patient participation and minimize the time it takes to safely test anticancer therapeutics. These adaptations can also minimize the financial burdens (e.g., cost of travel to the health care facility) and logistical burdens (e.g., taking time off from work to go to a health care facility) on clinical trial participants.
The pandemic has also resulted in modifications to cancer treatment regimens, such as increased time between doses or the use of oral instead of intravenous route of administration. Long-term studies will be important to determine whether such changes improve overall patient survival.
Worldwide scientific collaborations and rapid sharing of resources and expertise, already staples of the team science approach in cancer science and medicine, also offer a framework for rapidly responding to future public health crises of this magnitude.
Mitigating the COVID-19 Impact Through Evidence-Based Policies
The COVID-19 pandemic challenged the medical research community in many ways, including through the loss of productivity because of the suspension of laboratory activities and delays in reporting results of ongoing basic and clinical research. These issues cost NIH and its grantees approximately $16 billion in research costs. NIH took many important steps to assist researchers during these challenging times, such as extending deadlines for applications, allowing delayed submission of preliminary data after grant deadlines, authorizing grants to cover salaries and stipends of scientists during laboratory closures, and extending project timelines and requirements. NIH and NCI also provided flexibility with timelines and funding, such as no-cost extensions, case-by-case administrative supplements for unanticipated costs, and extensions on some grants due to delays caused by COVID-19. However, additional funding is needed to defray the costs incurred by the pandemic and revitalize the medical research enterprise.
The COVID-19 pandemic greatly impacted the conduct of cancer clinical trials by exacerbating existing hurdles for trial participation. In response, FDA outlined voluntary flexibilities that include using telemedicine to assess outcomes and wellness; home delivery of trial medications; remote consenting; and collaborations with local clinics, imaging facilities, and laboratories. If implemented permanently, these changes could decrease costs and make participation in cancer clinical trials more equitable for all populations including those belonging to racial and ethnic minorities and other medically underserved groups.
The federally declared public health emergency in response to the COVID-19 pandemic resulted in unprecedented, rapid shifts to support flexible telehealth use for both health care providers and the patients they serve. Multiple policies and legislations enacted in response to the pandemic allowed insurance coverage of telehealth visits and permitted providers to expand telehealth delivery to patients across state lines if permissible by the state, serve new and established patients remotely, and supervise patients using either audio or video communication.
It will be vitally important to rebuild the health care infrastructure, modernize health reporting systems, retain and train the health care workforce, and combat health-related misinformation while building public confidence in health care systems before a future pandemic. To do so and to minimize interruptions in cancer science and medicine during future pandemics, it is pivotal for Congress to authorize robust, sustained, and predictable investments in public health and medical research.
The AACR Call to Action
Decades of investment in basic, translational, and clinical research have enabled scientists to develop COVID-19 diagnostics, treatments, and vaccines at a pace never seen before, as highlighted by Senator Roy Blunt. This robust approach to medical research has saved hundreds of thousands of lives from COVID-19 in the United States and increased protection for patients with cancer who are immunocompromised and are at a significant risk of developing serious cases of COVID-19.
Cancer researchers were uniquely positioned to respond to the challenges posed by COVID-19, and they have played a vital role in combating the pandemic while continuing their quest to cure cancer. Yet the pandemic also took its toll on cancer research, treatment, and prevention initiatives. The staggering delays in clinical trial activations and disruptions to ongoing trials resulted in significant financial losses and jeopardized trial outcomes. Also, cancer screenings have yet to return to prepandemic levels, contributing to a likely increase in more advanced cancer diagnoses in the years ahead.
The pandemic also exposed the need for greater investments in public health and medical research and led to a watershed moment for modernizing how patients receive care. Under the CARES Act, the Centers for Medicare & Medicaid Services (CMS) flexibilities to expand telehealth services are only permitted during the public health emergency. As a result, without Congressional action, when the public health emergency ends, so would the CMS coverage of expanded telehealth.
This Call to Action builds on what was learned during the public health emergency and lists steps that should be taken to rebuild our public health infrastructure, enhance medical research, and modernize how patients receive care and enroll in clinical trials.
Invest in Medical Research and the Health Care Workforce
- Offset pandemic-related research costs by providing at least $10 billion for NIH and its grantees in emergency supplemental funding as proposed in the Research Investment to Spark the Economy (RISE) Act of 2021.
- Increase investments in cancer research, treatment, and prevention by supporting robust, sustained, and predictable growth for NIH and NCI, including at least $3.5 billion and $1.1 billion, respectively, in Fiscal Year 2022 for a total funding level of $46.4 billion for NIH and $7.6 billion for NCI.
- Expand tax policies to encourage philanthropic giving so that nonprofit cancer research organizations can continue to fund high-risk, high-reward research proposals and accelerate the discovery of new cancer treatments and cures.
Rebuild the Public Health Infrastructure and Strengthen Pandemic Response
- Develop a multiyear investment strategy to rebuild capacity of state, local, and federal public health infrastructures, including the health care workforce and the Strategic National Stockpile, so that the United States will be in a better position to combat future pandemics.
- Empower public health officials to speak directly to the public about the science of health emergencies and invest in a comprehensive national public health data reporting system to better track public health threats and all diseases, including cancer.
- Support CDC’s National Center for Chronic Disease Prevention and Health Promotion to reduce the incidence of comorbid chronic conditions that increase the risk of developing cancer or severe symptoms from infectious diseases. These investments should include $559 million in FY 2022 for Cancer Prevention and Control Programs to support comprehensive cancer control, cancer registries, and screening, and devise targeted strategies for public awareness campaigns designed to encourage and build on prepandemic screening levels.
Expand Access to Health Care and Telehealth
- Enact policies that broaden health care coverage and reduce inequities in access to health care, such as expanding Medicaid.
- Deliver a permanent extension of CMS-approved telehealth services and support greater access to telehealth by providing funding, including grants, to support high-speed broadband, reach underserved areas, and address the digital divide.
Strengthen and Modernize Clinical Trial Development
- Support FDA’s regulatory science initiatives and advance the development of oncology products by providing an increase of at least $343 million in discretionary budget authority in FY 2022.
- Increase diversity in clinical trials and alleviate the financial burden on prospective trial participants by reimbursing patients for ancillary trial-related costs, such as transportation and lodging, as contained in the DIVERSE Act.
The past two years have been some of the most challenging times ever faced by the United States and the entire world. Almost one million Americans have died from COVID-19, and millions more continue to suffer from long-term symptoms and major disruptions to everyday life. The pandemic also highlighted the crucial need for robust investments in medical research and the health care workforce. Cancer researchers and physicians have been on the front lines helping to develop safe and effective COVID-19 vaccines and treatments at a record pace as well as caring for severely ill patients with cancer.
In the face of the current health crisis due to the COVID-19 pandemic, cancer and other diseases continue to be major ongoing challenges. If we are to reach the day when cancer is no longer a major health threat to our nation’s citizens, Congress must provide the significant funding that is crucial for research supported by the NIH and NCI. All stakeholders must also take the necessary steps to strengthen our nation’s public health infrastructure and the health care workforce so that we are better prepared for any future crises. Robust, sustained, and predictable annual funding increases for the federal agencies dedicated to advancing public health will foster future scientific advances, maximize returns from prior investments in medical research, drive economic prosperity, and support new lifesaving breakthroughs for citizens of the United States and around the world.