Delayed care: Reporting on the pandemic’s devastating toll on cancer screening and treatment

It was January 2021, and ProPublica reporter Duaa Eldeib knew she was onto an important story: the hidden toll of delayed cancer care during the pandemic and its unequal impact on communities of color.

She’d spoken with an Illinois physician who had shared a particularly troublesome story of a patient’s delayed cancer care. Follow-up calls with dozens of other doctors affirmed that postponing cancer screenings and treatment was having widespread and potentially deadly health impacts.

After much effort, Eldeib found a patient and accompanied her through a painful care journey. Speaking at the Center for Health Journalism 2022 National Fellowship this week, Eldeib shared her reporting process, and offered tips and strategies for connecting with sources. She was joined by Dr. Kashyap Patel, an oncologist from North Carolina who serves as president of the Community Oncology Alliance, who described the health disparities he routinely sees and how reporters can shine a light on these critical stories. 

Documenting the pandemic’s toll

Once Eldeib nailed down her story idea, she reached out to hospitals and asked if she could embed with a patient. With pandemic restrictions in place, they all declined. One rejection was less resounding, though, and she persisted, emphasizing the importance of this story. Ultimately, she connected with Dr. Paramjeet “Pam” Khosla, an attending physician and section chief of hematology and oncology at Sinai Health System in Chicago. 

Khosla was very open to discussing the pandemic’s impact, but she had little time to spare. Eldeib suggested they talk during Khosla’s nearly 40-minute commute. Those conversations ultimately led her to Teresa Ruvalcaba, a then 48-year-old factory worker who had ignored a strong pain in her chest for months. When she finally sought care, she was diagnosed with advanced inflammatory breast cancer. The delay had rendered the cancer “incurable,” Khosla said in the article.

When Eldeib asked if she could accompany Ruvalcaba for the next medical appointment, she agreed. From there, she asked to join the next one and ultimately visit her at home. With each encounter, Ruvalcaba’s comfort grew.

“There were times I would ask her questions and I could see her hold back,” Eldeib said. “Over time, I was able to build that trust. By the end, she shared things she hadn’t in the first interview.”

Initially, Eldeib hadn’t planned on including Ruvalcaba’s 24-year-old son Sergio. But she soon realized his key role: This was also the story of a son who had sacrificed for his family and was experiencing the weight of these responsibilities. When she first started asking interview questions, though, he’d respond with a few words. She asked if she could join him as he shuttled his mom to appointments. This allowed her to not only observe their dynamic but also to start building trust, she said. 

At Eldeib’s request, Ruvalcaba later shared her medical records, which helped fill in gaps and confirm facts.  

In writing the piece, Eldeib initially wanted to end on a hopeful note. But, after witnessing a particularly sad scene in the family’s home, she realized that optimism wouldn’t be truthful and described that moment instead. 

“This is their reality, this is what they’re going to be dealing with long after the story is over,” she said. “This is the truth of what it means to delay cancer care.”

Dialysis: why doesn’t anyone care?

Another reporting project Eldeib did for ProPublica started with data: the high hospitalization and death rates of dialysis patients during the pandemic. She wondered why she hadn’t heard more about the toll.

“You’re talking about an entire population getting decimated,” she said. “Why are people not talking about it?”

The group most impacted might explain that lack of attention, she said. Even before the pandemic, Black patients were more than four times more likely than white patients to develop kidney failure.

This time, she didn’t find a doctor willing to share a patient story. She submitted a public records request to the [which] medical examiner for death certificates that included both COVID and a secondary cause of death: End-stage renal disease.  Using that data, she made about 100 calls before finding someone willing to share their loved one’s story.

When the U.S. data was released, the results showed the devastation: Nearly 18,000 more dialysis patients died in 2020 than would have been expected based on previous year’s data.

Tackling screening and treatment disparities

The consequences of delays in cancer screenings, diagnosis and treatment during the pandemic are deeply concerning, said Patel, the chief executive officer of Carolina Blood and Cancer Care Associates.  

And, there is already evidence that these delays will compound existing racial disparities. He pointed to a study looking at overall declines in breast cancer screenings during the pandemic in Washington state and the inequities involved in that drop.    

Reducing these disparities could have far-reaching impacts in reducing premature deaths as well as reducing health care costs. Some strategies to address these disparities include increasing clinical trial participation, improving access to care by including after-hours and weekend appointments, and improving data collection to better understand patient populations, he said.  

Too often, physicians are focused on the body and treatments, and not the person and their distinct life experiences. But these are interconnected, he said. He shared a sample of a patient intake form that better addresses the whole patient experience. It includes categories such as whether a patient has child care or if they struggle with food insecurity.

Collecting that data offers valuable insights into what’s happening in patient lives, information that can impact their cancer screenings or treatment. He shared a spreadsheet from his clinic showing the multitude of patients who reported not having enough money for bills and food or who struggle with transportation.

Too often these stories of socioeconomic and racial disparities, the causes, and the costs do not make the news.

“Who talks about this?” he asked, turning to the room of journalists. “The challenge to all of you to bring this to the mainstream discussion.”

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