Undiagnosed cancer could be the next health crisis — and we aren’t ready

The National Cancer Institute and several other health care organizations last month released their 2022 Annual Report to the Nation on the Status of Cancer, which found that, prior to the pandemic, cancer death rates had declined but the rate of cancer incidence remained stable. 

While those numbers reflect tremendous efforts made in cancer treatment, factors related to pandemic-era care, especially regarding prevention, threaten this progress. Throughout the pandemic, policymakers and health officials enacted measures that politicized scientific evidence, while neglecting the downstream implications on Americans’ health and trust in providers. In turn, clinicians report unusual pathologies among younger patients without pre-existing conditions and increasing rates of metastatic disease, signaling a higher burden of disease. Now the question is whether the pre-pandemic trend of decreasing cancer mortality will be jeopardized going forward.  

In 2022, more than 600,000 people in the U.S. are projected to die from cancer. During the pandemic, many Americans missed recommended screenings that are necessary for early cancer detection and treatment and most haven’t returned to routine health care services. It’s a grim reminder that COVID-19, and responses to it, hindered access to crucial services and treatments that prevent and mitigate cancer, creating the perfect storm for the next public health crisis. That’s why it’s imperative that health care providers, public health officials, and policymakers recognize this crisis and mitigate its consequences as soon as possible.

Moreover, the notion of a volume rebound is an illusion as pandemic-era care has not just been delayed but forgone entirely. Despite new models that are intended to make health care more accessible, patients are not returning to pre-pandemic health care patterns. In fact, when care related to COVID-19 is excluded, utilization of all other health care services, with the exception of behavioral health, remains below pre-pandemic levels.  

The current data paint an ominous landscape of the future of cancer care and indicate that the drop in screenings and preventive measures may be more than just a temporary byproduct of the pandemic. This is of particular concern given Americans are resuming other activities such as travel and in-office work, but the same cannot be said for health care. For example, between 2019 and 2020, the number of breast cancer screenings declined by a stunning 25 percent. That trajectory continued into 2021, with a 4 percent year-over-year decline. In turn, the number of breast cancer diagnoses dropped by 14 percent between 2019 and 2020, and almost 9 percent between 2020 and 2021.

This decline is observable across multiple forms of cancers, including colorectal, cervical and lung cancer, with double-digit or near-double-digit percentage decreases in screenings and diagnoses occurring over the past two years. 

Unfortunately, this decline in diagnoses doesn’t mean that these forms of cancer are suddenly less common. Instead, these trends point to an emerging mortality crisis. Delaying screening by even one month can increase the risk of death by up to 13 percent. Imagine what a one- or two-year delay could mean for the several million people who develop cancer each year.

As the current data reflect, the quarterly share of new patients at oncology providers nationwide is stabilizing above pre-pandemic levels, indicating that new cancer diagnoses are becoming even more prevalent than they were prior to 2020.

The decline in cancer screenings is signaling increased acuity, increasing the likelihood that patients will receive an initial diagnosis of a more advanced stage of cancer, and therefore pose greater mortality risk. Between 2020 and 2022 alone, the percentage of newly diagnosed breast cancer patients presenting with metastatic disease, a key characteristic of advanced and lethal forms of cancer, increased by up to 19 percent. The percentage of prostate and cervical cancer patients presenting with metastatic disease also increased in that time, by 6 percent and 8 percent, respectively.

It’s too soon to understand the true magnitude of this expected surge in advanced forms of cancer, but researchers are beginning to quantify the trend. Many physicians have reported unusual pathologies presenting in new cancer patients. It’s a phenomenon that may worsen over time.

That increase in acuity is also manifesting in younger Americans without pre-existing conditions, an alarming trend that our health care system has dedicated few resources toward. In 2021, the U.S. experienced significant excess mortality across the population, but young and working-age Americans accounted for a disproportionate share of that excess mortality. Consistent with this trend, demand for certain higher acuity services, such as cardiovascular care, among younger patients is projected to be greater post-pandemic, raising the question of whether similar patterns will emerge in oncology. These new data suggest COVID-19 has not only driven but accelerated shifting acuity, and the results are starting to play out. 

Concurrently, the lack of patient engagement with the health care system is at odds with the simultaneous increase in health care suppliers, which include virtual platforms and non-hospital settings. As researchers are seeing, these new options simply have not brought patients back to care settings. 

To combat the emerging crisis of undiagnosed cancer, industry stakeholders must be proactive as they were during the COVID-19 pandemic. The core challenge is to re-engage patients who lack established relationships with primary care providers and to prevent fragmentation of established patient-provider relationships. 

That will require a  better understanding of consumers in all markets and factors that drive patient demand. It also must entail awareness campaigns that educate people, especially those who are at higher risk of cancer, on the vital importance of screenings and other preventive services. And in situations where patients won’t pursue care or lack the means to do so, the care needs to go to them.

It might take several years for us to grasp the consequences of missed cancer screenings and diagnoses. In that time, hundreds of thousands will be diagnosed with cancer and many will lose their battle. If industry stakeholders don’t act now to manage this emerging health crisis, we stand to face a potentially unpreventable wave of cancer cases, including more advanced-stage cases, across the population. 

Sanjula Jain, Ph.D., is a health economist who serves on the faculty of The Johns Hopkins School of Medicine. She is chief research officer and senior vice president of market strategy for predictive analytics company Trilliant Health. Follow her on Twitter @sanjula_jain.