When COVID-19 Cancels Your Cancer Appointments: Why Are We Still in Crisis Mode 2 Years Later?

A colon cancer survivor expresses her frustration about the way the health care system is currently being managed as yet another wave of COVID-19 cases caused her to cancel an appointment she’d waited three months for.

On a recent Sunday morning around 10 a.m., I missed a call but listened to the voicemail shortly afterward. It was someone from my cancer center informing me that my upcoming appointment — one I had waited three months for — was canceled due to the influx of COVID-19 patients at the hospital. They apologized and asked me to call them back to reschedule.

The human voice on the message was a nice change from the automated computer system that usually calls me with appointment reminders. I suppose the cancer center figured that using actual people to make these types of phone calls was worth the investment. I’d agree. I mean, it’s not ideal that the hospital is calling patients with cancer to notify them about cancellations. It was nice for a human voice to break the news compared to a machine.

So, I’ll give them a little bit of credit.

Also, in full disclosure, the Sunday morning message was the third one I’d received over the course of a few days. The prior calls had not come during times when I could answer my phone, and I wasn’t ready for this call on Sunday morning either. At least they were persistent.

But I’m annoyed, nonetheless.

I feel bad saying this because I truly am empathetic to anyone who gets sick, especially severely. Being in the hospital is never fun, and I can imagine that going in as a COVID-19-positive case is no cake walk. Being COVID-19-positive is a bit like wearing the scarlet letter these days. I’m glad hospitals exist and that we have trained staff who can offer life-saving support.

However, I’m frustrated at the leadership, structure and organization of health systems, many of which now run cancer centers. It makes me question if the patients are truly at the heart of the work.

We’re one of the richest countries in the world, and we pay those who lead our health systems very well. CEOs of hospital systems make millions of dollars each year. Even a 30-minute telehealth appointment at the cancer center — one without the expense of using a patient room and supplies — bills my insurance company around $300 these days. I’ll be generous and assume these high prices are because we’ve got very smart people working in health care that we need to pay.

So, here’s my question: If we’ve got some of the smartest minds running health care systems, why aren’t they better designed? I’m not just talking about public centers who often say their hands are tied because of red tape and policy. Even private hospital systems are in a crisis over another wave of patients with COVID-19.

I’m sorry, but I don’t understand.

This isn’t the first wave of COVID-19. We’ve been in this cycle almost two years and it doesn’t appear like we’ve made much progress. Why does an influx of patients for one disease mean patients facing other diseases miss the care they need? We’re still “borrowing from Peter to pay Paul” when it comes to our health care resources. Why?

This is a leadership issue.

We’re not thinking about the long game, we’re thinking short-term. Which, I do understand what this feels like. As a patient with cancer, I’ve had to make decisions based on life or death, not my future. But, as I’ve survived, I haven’t stayed in that place.

For over 20 years I’ve learned to get out of survival mode and look ahead so I’m ready for the life-or-death crisis again. I think it’s fair to expect more from those leading systems that help patients to do the same.

This will catch up to us — putting preventive cancer screenings on hold (many that find early-stage cancers), telling cancer survivors to wait on follow-up appointments (many that also find pre-cancerous concerns) and quickly sending patients facing pain in the ER home (many of whom later pop up with late-stage disease).

Over a year ago, groups like the National Cancer Institute and the American Cancer Society alarmed us about seeing screening rates drop, data projecting future cancer cases and patients with delays in care. So, what did we do to both address these warnings and be ready for a future wave of patients with COVID-19?

Not much. It appears we got comfortable with crisis mode.

I promise the point of this column isn’t to trash or disrespect the health care community that is burning out and exhausting themselves to care for patients. Thank you to every doctor, nurse, tech and facilities staff for what you’ve been doing the past two years. You truly are our heroes.

This is more of a plea to those sitting in boardrooms at the top of tall hospital towers, those overseeing this mess. Please recognize the burden this lack of strategy is putting on those who are sick — those whose medical bills are funding the board room seats and snacks around the table. Please find new ways so every patient can get care as they need it. Please prioritize prevention.

I recognize this is a lot to ask for, and it won’t be accomplished anytime soon. But I have faith it can be done because pandemics tend to bring out innovation and new ways of thinking once the dust settles.

But while we wait for that, I’ll put in what seems like a smaller and even more reasonable request: Please make rescheduling my appointment easier. When I do respond to the voicemails, it will likely take me 10 to 20 minutes due to automated messaging systems and call forwarding. This is exhausting.

Any chance we could invest in technology that makes scheduling (or rescheduling) an appointment at the cancer center as smooth and easy as ordering a pizza from my phone or requesting delivered groceries?

If so, I’d have that appointment rescheduled by now and your team wouldn’t need to send me a fourth reminder.

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