Introducing a Two-Part Series
“Are we there yet?”
A question both expected and dreaded by parents everywhere. Usually asked about 10 minutes into a long drive or flight, it not only reflects our children’s impatience but also their ignorance (innocence?) about time and space, about what it takes, in minutes and money and movement, to get from where we are to where we need to be.
But this question is more challenging to answer when you’re unsure of where your starting point is and what your destination should look like. This is the situation in which we now find ourselves with the global COVID-19 pandemic.
Here in North Carolina, we are believed to be just past “the surge,” i.e., the anticipated peak in cases where the balance between clinical need and clinical resources can potentially be upended, as we have seen at various sites across the country and around the world. For a variety of reasons including effective government and institutional leadership across the state, the surge in North Carolina does not appear to have been as severe as in other parts of the country, and the Duke University Health System (DUHS) is now taking its first tentative steps into the post-pandemic future.
But as far as this future goes, are we really there yet? With the re-opening of our clinics and our operating rooms, we hope to resume seeing patients whose non-COVID care was paused or deferred. But we do so amid an uncertainty that stems from our awareness that this pandemic isn’t really over. As of early May, 2020, there is no cure and there is no vaccine. Nationwide, the rate of positive test results is as much associated with the highly disparate availability and accessibility of testing as it is with the actual burden of disease, which is woefully underestimated.
Our patients, too, are understandably uncertain, afraid that a trip to the doctor could give them a new health problem to add to their old ones. Some will have lost their medical insurance. Others may simply feel that, given competing financial and social considerations, their health must take a backseat to COVID.
Many of our patients will not come back. And when they do, our options for curing them may be more limited.
As a health disparities researcher and cancer surgeon, I am especially worried that how, when, and if cancer patients re-engage with healthcare will not only reflect inequities that existed before the pandemic but also the intensification of those inequities that COVID-19 has provoked.
This blog post represents the first in a two-part series on cancer disparities after COVID-19. Today’s post focuses on cancer care, while the second, forthcoming one will focus on cancer research. These blog posts will not, indeed CANNOT, be comprehensive. Though it may be too early to say we are “post-pandemic,” I nonetheless think we need to be anticipatory in our response, to think about what cancer in the time of COVID will look like for the most vulnerable members of our community.
Part I: Disparities in Cancer Care After COVID-19—From Diagnosis to Disposition
What are the implications for disparities in cancer care access, treatment, and survivorship? Here are some of my predictions:
Many people will skip screening this year…and screening guidelines may be influenced and refined by these pauses.
The social and economic upheaval of COVID-19 cannot be underestimated. Many of our patients have lost or will lose their employer-based health insurance, and for those who do keep their insurance, loss of consistent income may affect their ability to afford deductibles and co-payments. Although the Affordable Care Act has made screening more accessible for many, financial constraints may nonetheless cause many people to forego colonoscopies, mammograms, Pap smears, and other forms of screening. The implications of these skipped screens will vary significantly depending on the anatomic site and cancer subtype.
Among physicians who treat breast cancer, there has been growing concern about overdiagnosis of indolent, early-stage disease that might not otherwise have ever been a threat to a woman’s life. Accordingly, some organizations such as the U.S. Preventive Services Task Force (USPTF) have been encouraging biennial instead of annual mammograms for women in particular age groups and who do not have personal or family histories that put them at higher risk for malignancy.
At the other end of the spectrum, however, there are the biologically aggressive tumors, including triple-negative cancer, for which early diagnosis represents an opportunity to cure a disease that, not infrequently, is fatal. Notably, black women are disproportionately affected by triple-negative breast cancer and are more likely to be diagnosed at younger ages. I predict many women will not only defer but actually forego their mammograms this year. As a result, I fear we will see more black women present with symptomatic locally advanced or metastatic disease that might otherwise have been caught earlier with screening, while many other women will be essentially unaffected by skipping a year.
I dread the disparities in stage at presentation we will see, but I hope that the variable dispersion of screening benefit we observe will finally trigger a refinement of screening guidelines, particularly a collective recommendation that black women be recommended to undergo earlier screening with annual (rather than biennial) exams in recognition of their higher risk for biologically aggressive tumors.
Oncologic work-up and treatment in the United States will become less invasive, will rely increasingly on telehealth…and will leave many patients behind.
COVID-19 has forced a reckoning within American healthcare, which is notorious for ordering more tests and procedures than comparably resourced healthcare systems in other parts of the world. But COVID-19 has forced us to truly incorporate risk into our assessment of whether a trip to the hospital is really worth it for our patients, who are increasingly empowered to make and voice these assessments themselves. Not only are we forced to consider the risk that our patients – who are often immunocompromised – might contract an infection through contact with the healthcare system, but we must also consider how complications of a test (e.g., contrast-induced nephropathy) or procedure (e.g., thrombosis of a reconstructive tissue flap) might lead to future increased contacts with the healthcare system.
In-person evaluations of patients under post-treatment surveillance and of post-operative patients not requiring drain or suture removal have largely moved to telehealth visits, with varying success. For our younger, well-resourced patients who may also be more familiar with the necessary technology, telehealth has provided a welcome alternative to in-person visits, eliminating the hassles of travel and parking and disrupted schedules. Furthermore, many state and private payers are now offering higher reimbursement for telehealth and even telephone visits than they have in the past in response to needs created by COVID-19. Going forward, some parts of DUHS are aspiring to have 30% of ALL visits be conducted via telehealth. It remains unclear, however, whether this change in reimbursement will prove durable.
There is anecdotal evidence of a lesser degree of telehealth engagement among our rural, older, and minority patients, as well as among patients for whom English is a second language. These findings are not entirely surprising. Although 96% of Americans are estimated to have cellphones, 81% own smartphones, and 77% have access to home broadband internet, rates of cellphone, smartphone, and broadband ownership drop to 91%, 53%, and 55%, respectively, among those who are ≥65, while rates of home broadband access range from 79% among white persons to 66% among Black/African American persons and 61% among Hispanic persons. Here in North Carolina, our rates of broadband access are nominally better than the national averages but those figures belie geographic disparities obscured by an artifact of how these rates are calculated.
Patients who have difficulty accessing the more sophisticated forms of telehealth available via smartphones and broadband will either choose to come in person (with the associated risks mentioned above) or they will settle for a telephone visit through which their complaints or concerns might only be imperfectly communicated. Or they won’t come at all.
Another potential complication: if high levels of telehealth use become a measure of care quality, providers in rural and minority-serving communities may ultimately be penalized if their own office infrastructure or the connectivity issues of their patients prevent optimal, clinic-level engagement with telehealth.
Thus, I have no doubt that telehealth is here to stay, nor that overall, its COVID-triggered evolution and expansion will be good for patients and clinicians. However, many, many patients will be left behind, running the risk of imperfect or absent communication between these patients and their providers and exacerbating extant disparities in cancer outcomes across all disease sites.
There will be a revolution in long-term-care facilities…and oncologists must be a part of it.
When you are a resident physician, especially when you’re an intern, disposition – that is, when and where a patient will be discharged – is second only to keeping patients alive among your list of priorities. For patients who are unable to go home at time of discharge, social workers and care coordinators strive heroically to find a long-term care (LTC) facility that will (1) be able to perform the spectrum of care required for the patient’s condition, (2) is deemed acceptable by the patients and their families (who will often visit the site prior to discharge and may have location preferences), and (3) will accept the patient’s insurance, recognizing that some plans offer NO LTC coverage of any kind. Aligning these 3 goals can sometimes take weeks, only for patients to go to locations that are unclean and unsafe.
LTC facilities have been at the center of the COVID-19 epidemic, with patients and clinicians – who are disproportionately women, people of color, and immigrants – at these sites contracting and dying from COVID-19 at alarmingly high rates. We must accept the fact that LTCs are insufficiently regulated and palpably unequal. Many of these sites need to be overhauled or closed. We should have higher standards for the places where we send our patients when they leave the hospital, and as physicians, we must realize that disposition for disposition’s sake cannot be the goal.
As an alternative, we must think very seriously about how to make patients’ homes better equipped to provide the services currently provided at LTCs. Clinicians at Duke such as Anthony Sung, MD, have begun to demonstrate the feasibility of delivering complex medical care at home for patients as medically fragile as bone-marrow transplant recipients. The promise of high-quality medical care at home is alluring, but realizing this promise will be impossible for many. For patients with Medicaid, options for both LTC and home care are incredibly limited. For patients without insurance or who are housing-insecure, high-cost, ongoing, in-hospital care is sometimes the ONLY option.
Thus, from a clinical, moral, and financial perspective, clinicians and health systems must prioritize policy reforms to improve (1) payer coverage for both home-based and long-term-facility care and (2) oversight of LTCs.
I hope these predictions represent a starting point for reflection and reform. I offer them less as harbingers of doom, and more as calls to action. As we face a future beyond COVID-19, we have an opportunity to be smarter about cancer screening, treatment, and survivorship…and an obligation to ensure that no one gets lost or left behind on our journey to a post-pandemic future.