When Worlds Collide: How Global Infectious Outbreaks Have Changed Cancer Care

The past 40 years of oncology research and care have shown that cancer is a complex disease. Although individual malignancies are challenging to manage on their own terms, what contributes to this complexity is the fact that cancer does not exist in a vacuum.

For years, communities around the world have experienced different epidemics and outbreaks, unleashing widespread sickness and devastation. Of note, since its recognition in the early 1980s, the HIV/AIDS epidemic has resulted in approximately 44.1 million deaths associated with the virus.¹ More recently, the international outbreak of COVID-19 has seen an approximate cumulative death toll exceeding 7 million despite the adoption of quarantine- and vaccine-related strategies.²

Focusing on the granular consequences and implications of pandemics such as these reveals a notable intersection with the world of cancer management. The COVID-19 pandemic especially exacerbated many cancer-related issues, effectively halting critical processes and routines that were necessary for detecting, researching, and combating new cases. The compounded presence of typical cancer care, intertwining with a global health crisis, would yield long-term effects on patients and clinicians alike.

“It’s an added layer of trauma in terms of dealing with cancer,” Daniel C. McFarland, DO, stated about the COVID-19 pandemic. “Cancer is something that fundamentally changes a person’s life. Now, you’ve had this infection on top of it and all the ambiguity around it.”

McFarland, the director of the Psycho-Oncology program at Wilmot Cancer Center; a medical oncologist who specializes in head, neck, and lung cancers; and the psycho-oncology editorial advisory board member for ONCOLOGY, recalled the ramifications of the COVID-19 outbreak during the height of the pandemic, when patients undergoing care in the hospital were not able to see their family and loved ones due to a need to quarantine. Even years later, the fallout from the pandemic has produced a lingering impact like any “traumatic situation would.”

As part of looking back at the past 40 years of advancements and developments across the oncology sphere, experts in the field reflected on how international crises, such as the COVID-19 pandemic, affected their work as well as the lived experiences of their patients. From logistical hurdles delaying in-person diagnoses and therapy to the long-term psychological impacts of physical quarantines interrupting day-to-day affairs, researchers and clinicians shared their perspectives on global crises they are navigating to this day.

The Physical and Emotional Challenges of COVID-19

The COVID-19 pandemic, specifically, raised several issues on both sides of the cancer care coin. Just as patients encountered new barriers to timely screening and care, providers needed to adjust their workflows and practices to manage diseases as efficiently as possible. It was necessary for seasoned clinicians to embrace new technologies and workarounds while minimizing the spread of an infectious disease that could magnify the severity of one’s malignancy. At the same time, fellows and other up-and-comers in the field had to learn their specialties during a uniquely tumultuous time.

MinhTri Nguyen, MD, a medical oncologist specializing in breast cancer at Stanford Health Care and a breast cancer editorial advisory board member for ONCOLOGY, was one of many who entered the oncology world around the height of the COVID-19 pandemic. He was a first-year hematology/oncology fellow at Cleveland Clinic in 2021, a time marked by great uncertainty.

“It was constant uncertainty everywhere. As someone who was training to become an oncologist and was treating patients at that time, it was unstable,” Nguyen recalled. “What I learned, though, is that through it all, the messaging of uncertainty had to come from a place where it provided not only leadership, directionality, and intentionality, but also [one] that honored the compassion that we needed for our patients [and] our own peers.”

Nguyen noted that his experiences as a fellow during the COVID-19 pandemic taught him how closely cancer is tied to the public health infrastructure. Good care, he said, was impossible with a “failing public health infrastructure,” as system-level disruptions not only impacted the delivery of care but also altered the trajectory of patient outcomes.

The system-wide interruptions stemming from the COVID-19 pandemic had tangible effects on cancer-related survival and other patient outcomes. Findings from a cohort study published in JAMA Oncology showed that patients who were diagnosed with cancer in 2020 and 2021 experienced worse short-term survival compared with those who were diagnosed from 2015 to 2019.³ Compared with survival trends observed in 2015 to 2019, 1-year cancer-specific survival (CSS) rates for patients with early-stage diagnoses were a 0.44 percentage point (95% CI, –0.54 to –0.34) lower than expected in 2020 and a 0.27 percentage point (95% CI, –0.37 to –0.16) lower than expected in 2021. Regarding patients with late-stage diagnoses, 1-year CSS rates decreased by 1.34 percentage points (95% CI, –1.75 to –0.93) in 2020 and 1.20 percentage points (95% CI, –1.69 to –0.71) in 2021 compared with the prepandemic period.

“Disruptions related to the COVID-19 pandemic in the US have had a substantial impact across the cancer care continuum. This cohort study’s findings of significantly decreased rates of short-term cancer survival during the pandemic’s first 2 years are in line with previously documented interruptions to screening, diagnosis, and treatment,” Todd Burus, PhD, from Markey Cancer Center and the Division of Biomedical Informatics at the University of Kentucky College of Medicine, wrote with coauthors in the publication featured in JAMA Oncology.³ “Continued surveillance is needed to assess whether additional changes in survival outcomes extended further into and after the pandemic.”

According to Nguyen, patients with cancer experienced various logistical burdens during the COVID-19 pandemic, including delays in screening, diagnostic care, and treatments such as surgery or chemotherapy. These burdens, he said, disproportionately affected patients with aggressive disease subtypes who could not undergo immediate treatment, which aligned with research he conducted showing how time-to-treatment initiation (TTI) may correlate with survival outcomes. In his study, “Shorter Time to Treatment Is Associated With Improved Survival in Rural Patients With Breast Cancer Despite Other Adverse Socioeconomic Factors,” which was published in ONCOLOGY in January 2023, he and his colleagues demonstrated that a rural population of patients with early-stage breast cancer experienced shorter TTI and better survival outcomes compared with those in urban populations.⁴

Beyond its physical impacts on the delivery of care and survival, the COVID-19 pandemic also placed an immense emotional toll on many patients with cancer. According to Nguyen, the emotional support that caregivers, family members, and friends could offer to patients is an “essential component of care.” Needing to come into the clinic without caregivers and loved ones during the pandemic, however, contributed to an already profound sense of isolation among patients.

These feelings of isolation fall back upon providers to work more effectively with the “acculturation aspect of becoming a patient,” McFarland said. In the psycho-oncology realm, fears and worries tied to COVID-19 may manifest in patients, effectively complicating the course of their care.

“Let’s say you have someone with a compromised immune system who’s afraid of COVID-19. Their fear is rational; the fear makes sense,” McFarland stated. “But then [there are] all sorts of grays around it.”

From his experience, McFarland has seen certain patients develop a form of agoraphobia, in which they avoid leaving the house over fears of exposure to COVID-19 infection. On the other end of the spectrum, some at-risk patients feel compelled to venture out of the house because they fear that they wouldn’t be “living” if they were to remain indoors.

The Rise and Growth of Telehealth

As part of the attempts to limit the spread of COVID-19, the early stages of the pandemic saw a variety of national stay-at-home orders, quarantines, and other directives limiting physical contact across populations. With the sheer reduction in face-to-face gatherings and activities, people from all backgrounds took to their phones, tablets, and laptops to pick up where they left off. As students attended virtual classes via Zoom and companies adjusted to new work-from-home models, many oncologists adapted to the world of telemedicine.

The COVID-19 public health emergency accompanied the lifting of many telehealth restrictions across different medical industries, causing a significant increase in oncology clinicians carrying out their work through digital platforms. According to findings published in JNCI Cancer Spectrum, the average crude rate of telehealth use within 1 month of cancer diagnosis was 0.3% from March 2019 to February 2020.⁵ This rate climbed to 17.7% between March 2020 and March 2021, with a peak rate of 33.6% in April 2020.

One of many who embraced this new wave of telemedicine was Michelle B. Riba, MD, MS, the medical director of the Psych-Oncology program at the University of Michigan Rogel Cancer Center, a clinical professor in the Department of Psychiatry at the University of Michigan, and the associate chair for integrated medical and psychiatric services of the University of Michigan Eisenberg Family Depression Center, as well as a psycho-oncology editorial advisory board member for ONCOLOGY.

“We moved very quickly to a telehealth model. Before [the pandemic], psychiatry was one of the specialties that was slow to pick up on this [compared with] other disciplines like surgery,” Riba said. “Psychiatry [previously] stuck to the in-person model, but we were able to pivot, globally, to a telehealth model, which has stayed with us today and has shown us a lot of utility.”

Riba noted that telehealth and virtual care have helped tremendously by offering group, individual, and family therapies, especially to patients with limited transportation and those at a higher risk of experiencing infections. She and others in her field combated feelings of isolation among patients by sharing advice with patients on exercise and keeping in touch with family and friends through platforms such as Zoom.

“People who had financial issues or were already stressed at home needed some special extra support in those days. People were multitasking and having to homeschool children while having their own jobs,” Riba stated. “There was a lot of pivoting for various family members and trying to solve some of these issues with patients. It was difficult for everyone.”

Nguyen testified to the importance of emergent telehealth modalities during the COVID-19 crisis, stating that they would not have been so easily adopted if not for the pandemic. Although optimizing their use remains an ongoing challenge, he described how telehealth may help address certain inequities observed in public infrastructure.

Findings from a retrospective analysis of patient data from the Johns Hopkins Health System between January 2019 and December 2023 indicated how telehealth could impact certain outcomes in cancer care despite potential disparities in its usage.⁶ Data showed that concurrent-year receipt of cancer-related telehealth services correlated with lower odds of emergency department use (OR, 0.91; 95% CI, 0.88-0.94) and hospitalization (OR, 0.78; 95% CI, 0.75-0.81). Furthermore, patients who were more likely to use telehealth services included those who resided in areas that were rural (OR, 1.11; 95% CI, 1.10-1.13), had higher COVID-19 prevalence (OR, 1.00; 95% CI, 0.99-1.00), and had higher maximum cable internet download speeds (OR, 1.71; 95% CI, 1.29-2.28).

“Patients who reside in areas with very low connectivity still didn’t get access to this innovation that we were hoping [would] solve a lot of our issues…. Innovation should remember to look at how it should bridge inequities,” Nguyen said. “[The pandemic] clarified for us that telehealth works best when it’s complemented with in-person care. I don’t think in-person care should go away, but telehealth is [also] most effective when it’s used intentionally and equitably for all.”

McFarland acknowledged how telehealth could benefit his care from a psycho-oncology perspective, although he had a few reservations about its use. On the one hand, telehealth has expanded his ability to see and counsel a greater number of patients, especially those with transportation difficulties. However, he noted that mental health–based services are “hard” by design, as they challenge patients to confront their emotions and take the time to internalize the process.

Telehealth can flip this dynamic on its head, according to McFarland. He recalled logging onto his computer in his clinic space with a coffee at his side in a specific digital session—convenient, but not quite “the lap of luxury.” Once the video call started, his computer screen showed his patient sitting by the pool, soaking in the summertime sun while sipping a daiquiri.

“Something feels very wrong about this,” McFarland said when looking back on this meeting. “This is something people are a little confused about when it comes to mental health. They think, ‘Oh, this should feel good’… [It is] not like I want to make it harder for everyone, but there’s a reality that we’re not going to chat about the weather. It isn’t like we’re going to just hang out and talk about sports or something. No, we’re going to do real work.”

Blood Disorder Crises: The Hurdles of HIV/AIDS and Hemophilia

Beyond the scope of the COVID-19 pandemic, the enduring HIV/AIDS epidemic has complicated cancer care for specific patient populations. Specifically, these viruses have exacerbated issues associated with hemophilia and other blood disorders.

From the beginning, patients with AIDS were one of the hardest-hit groups when it came to seeking blood products and transfusions for conditions such as hemophilia, according to Riba. When she was a medical student and resident at the University of Connecticut School of Medicine, the state contained a large hemophilia population, which introduced many therapeutic challenges. She noted that many patients who were “quite terrified” about the situation were not disclosing that they identified as LGBTQ+.

“At that time, we didn’t have a good way to address this. There was not a way to get care in an anonymous way,” Riba described. “It took some time to get [universal testing] enacted in hospitals and clinics.”

According to data shared by The Haemophilia Society, approximately 6000 people with hemophilia and other bleeding disorders received treatment with contaminated clotting factors containing HIV and hepatitis viruses in the 1970s and 1980s.⁷ Some patients had unknowingly spread infections to their partners; since this period, there have been more than 3000 deaths associated with this contamination. Riba described how certain hematologists on her team experienced sadness about their inadvertent contribution of tainted blood products to patients with hemophilia.

“That was akin to what happened later with COVID-19. We were so heartbroken when we couldn’t care for our patients in the way we were used to,” Riba said.

This outbreak was a difficult time in terms of mental health for patients with hemophilia and their loved ones, which Riba and her colleagues aimed to address in different ways. Riba would later participate in the National Hemophilia Foundation (now known as the National Bleeding Disorders Foundation) Psychosocial Committee as a means of managing the psychological issues that emerged from inadvertently spreading HIVS/AIDS to patients with hemophilia, as well as their partners and loved ones.⁸

According to the authors of a population-based study published in the Journal of Clinical Oncology, cancer has become a leading cause of morbidity and mortality among aging populations with HIV, as patients with both cancer and HIV have experienced higher cancer-specific mortality rates than those with cancer without HIV.⁹ Among 16,334 individuals with HIV from 2001 to 2019, investigators observed higher risks of not receiving treatment for cervical cancer (adjusted OR [aOR], 2.03; 95% CI, 1.52-2.70), diffuse large B-cell lymphoma (aOR, 1.53; 95% CI, 1.38-1.70), and Hodgkin lymphoma (aOR, 1.39; 95% CI, 1.19-1.63), among other disease types.

“The magnitude of the observed cancer treatment disparities has narrowed in recent years, perhaps because of increased awareness and efforts directed at improving cancer care for [people with HIV]; however, further intervention is urgently needed to ensure optimal cancer treatment and outcomes for people with cancer and HIV,” lead study author Jennifer K. McGee-Avila, PhD, MPH, CHES, CPH, a cancer prevention postdoctoral fellow at the National Cancer Institute, wrote with coauthors in the publication.⁸

What Can the Field Learn From These Epidemics?

Global crises such as the COVID-19 pandemic and the HIV/AIDS outbreak have negatively impacted patient outcomes and compounded certain treatment disparities that persist to this day. At the same time, such international emergencies have inspired the rise of telehealth, along with other alternatives and workarounds that may assist with efficiently delivering cancer care.

Looking back, what should experts take away from these outbreaks to elevate their treatment?

From McFarland’s perspective, the COVID-19 crisis brought mental health awareness to the forefront for both patients and providers. Between the burnout that clinicians experienced in their work and the feelings of isolation among those with cancer, the pandemic took its toll on everybody involved. Addressing the psychological issues that surround such diseases and epidemics, however, can be difficult, especially with what McFarland described as a “for-profit system.”

“It’s hard to make money in mental health. Why can’t we just get more therapists? Why can’t we just get more psychiatrists? You can, but you must be willing to pay for it. Our payment structures just don’t fundamentally support it,” McFarland stated.

The COVID-19 pandemic also demonstrated the importance of addressing health equity proactively, according to Nguyen. Systemic disruptions, such as the quarantine and lockdown measures, can reveal what providers lack or where they may fall behind in terms of providing equitable treatment to patients.

Additionally, Nguyen highlighted unity as an emergent theme during the pandemic, describing a sense of togetherness with other health care providers that wasn’t “felt in a very long time.” As a trainee and fellow during the crisis, Nguyen worked alongside staff members who were 20 to 30 years into their professions. Regardless, everyone on his team chipped in and did whatever was necessary without hesitation, regardless of differences in their subspecialties, titles, and level of experience or hierarchy.

“We’re all one specialty, right? It’s just one title; we just do medicine. We’re healers in medicine,” Nguyen emphasized. “I hope we can remember that. As individuals, we’re great. [However], if we work as a group in a lot of ways to solve health infrastructure, our own field, and even help each other out, we are much better as a whole.”

Acknowledging how quickly infections such as COVID-19 and HIV can spread, Riba described how providers and researchers should learn from one another to carefully monitor those infections.

In the context of the COVID-19 lockdowns, Riba noted that medical students adapted quickly to learning about their specialties when they were unable to attend any in-person lectures. Furthermore, rapidly published journals were “terrific” when it came to disseminating new information that clinicians could leverage in a timely fashion.

“Learning from the past and not forgetting our history will help us move forward, especially with groups of people who really need the information much more quickly [rather] than waiting for something to be published a year from now,” Riba said. “We should make sure we archive these kinds of good ideas so that we can bring them out again if needed.”

References

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