By Clarissa Donnelly-DeRoven

Dr. Katherine Reeder-Hayes, an oncologist and researcher at UNC Chapel Hill, recently had a patient arrive at her office with advanced stage breast cancer. The patient listened as Reeder-Hayes explained what she was facing and how quickly they’d need to start care.

But there was resistance, Reeder-Hayes said. The patient kept asking if there was any way she could delay starting treatment.  

“She really needed to get started with her chemotherapy — that was going to enable her breast cancer surgery. And she kept asking me, ‘Could we do this in a couple of months?’ ,” Reeder-Hayes said. “I really didn’t understand the question. I thought perhaps she didn’t understand the seriousness of her diagnosis.”

As Reeder-Hayes probed more, she learned that in addition to having advanced breast cancer, her patient also did not have health insurance. She’d been trying to obtain a plan she could afford, and though she’d eventually found one, it wouldn’t kick in for a few months. 

“She was afraid that if she started cancer treatment, she and her family would be financially devastated,” Reeder-Hayes said.

The rate of many routine cancer screenings dipped during the pandemic, plummeting after the initial emergency declaration in spring 2020 and rebounding in June 2021 to levels that remained about a third lower than pre-pandemic levels. This has led researchers and health workers to worry what the decline could mean for people who already faced systemic barriers — such as being uninsured — to accessing cancer care. 

Imagining what health equity in cancer care could look like in a post-pandemic world served as the framework for a virtual conversation, conducted by the American Cancer Society in early November, in which Dr. Reeder-Hayes and two other North Carolina cancer equity health workers spoke. 

Among all the things that might help, they argued that Medicaid expansion has shown itself to be the critical first step to creating more equitable cancer care systems.

Existing disparities

Dr. Ronny Bell is a social science and health policy professor at Wake Forest School of Medicine, and the director of the Cancer Health Equity Office at Wake Forest Baptist Comprehensive Cancer Center. The facility serves many rural patients, a good chunk of whom get cancer and die of it at disproportionately higher rates.

“We serve 58 counties in western North Carolina, southwestern Virginia, and the southern portion of West Virginia,” Bell explained. “We have a number of cancer disparities in our catchment area.” 

Some disparities are connected to regionality in general: “We see a 13 percent higher overall cancer mortality rate in our catchment area and rural population, and a staggering 30 percent higher lung cancer mortality rate,” Bell said. The region has a high proportion of smokers, and also high radon exposure rates — the second leading cause of lung cancer.  

Other disparities are tied to race and the way it intersects with rurality. Black residents within the region the hospital serves experience higher rates of breast and prostate cancer, while Black, rural residents in the hospital’s region are 18 percent more likely to die from colorectal cancer than the general population. 

“We have the tendency to blame patients for the situations that they’re in,” said Dr. Angelo Moore, the associate director of community outreach, engagement, and equity at the Duke Cancer Institute

a table describing the difference cancer incident rates within the catchment area for Wake Forest Baptist's Office of Cancer Health Equity.
In a newsletter from January 2019, Wake Forest Baptist’s Office of Cancer Health Equity created this table to show the disparities in cancer among the populations they serve. Credit: Wake Forest Baptist Office of Cancer Health Equity

It’s a tendency that’s unfair, he said. 

“I’ve been in health care for almost 30 years, and it is very complex to me, and I have the medical knowledge, I’ve been in multiple health care systems. So just imagine individuals [who] have no knowledge of health care,” Moore said.  “We have so many structural systems that are set up to create a negative way for people to get care.” 

The institute he runs conducts patient education about preventative screenings, along with education on how to navigate the health care system. But, he said, those programs will always be insufficient if people don’t have access to health insurance. 

“When you talk about populations that are impacted the most with health disparities, these are the same individuals who don’t have access to care,” Moore said. 

Reeder-Hayes agreed. 

“In breast cancer, as in most common cancer screening programs, it’s really important to remember when we’re looking with an equity lens, that a screen doesn’t save anybody’s life,” she said. “It doesn’t help to know somebody has a cancer if the action steps that take place after that are all broken and fragmented.”

The connection between health equity and Medicaid expansion

The panelists all agreed that one critical step to expanding cancer care equity is expanding Medicaid. As a result of the 2009 Affordable Care Act, states have an option to cover all individuals with earnings that are below 138 percent of the federal poverty level. North Carolina is one of only 12 states that has not expanded the state- and federally funded program. 

In 2018, just over a million non-elderly people in the state were uninsured, about 13 percent of the state’s total population. N.C.’s uninsured rate is higher than the nationwide uninsured rate, according to the Kaiser Family Foundation.

For years, studies have found that people without insurance are far more likely to die of cancer than those with insurance. Dr. Syed Zafar, a gastrointestinal oncologist and professor at Duke University, has written about how the astronomical cost of cancer care — for those with and without insurance — can worsen mortality

The burden of being uninsured is not evenly distributed. In North Carolina, about 8 percent of the white population is uninsured, while 11 percent of Black residents and nearly 30 percent of Latino residents don’t have insurance. The Kaiser Family Foundation estimates that, were the state to expand Medicaid, half of the residents who’d receive coverage would be people of color.  

Map showing states that have and have not expanded Medicaid. Courtesy of Kaiser Family Foundation

“When we talk about expanding Medicaid — I should have showed you all a map — if you look at states that have expanded Medicaid and states that have not, and you put that side by side to a map of the states with slavery in the 1800s, it’s almost identical,” Moore said. 

“We talk about structural barriers and structural drivers and structural racism and discrimination — by us not expanding health care, we are putting a whole population of people at a disadvantage.”

Reeder-Hayes explained that states that have expanded Medicaid are already seeing rises in cancer screenings, especially in mammograms. More screenings mean more people are diagnosed at earlier stages, when the cancer is more likely to be successfully treated. And in terms of disparities in treatment once a diagnosis is made, research has shown that in Medicaid expansion states people receive timelier care for their cancer. 

The evidence is clear, she said: Medicaid expansion improves cancer care, and cancer outcomes. 

“The question is whether we want to wait 10 more years for the evidence that it also saves people’s lives,” Reeder-Hayes said,  “Or do we want to apply common sense to the question now and know that those upstream improvements are going to result in downstream mortality improvements and act sooner?”

Bell, from Wake Forest, said the same. 

“Medicaid expansion can go a long way to providing care in places where we normally wouldn’t have that care,” he said. “We have patients coming to our cancer center from three hours away. And so to the extent that we can break down some of those barriers through Medicaid expansion, I think we would have a significant impact on our rural communities.”

N.C.’s state government has been in a stand-off for years about Medicaid expansion. By and large, Republicans in the legislature adamantly oppose it, though local Republicans in a handful of western counties have expressed support. Democratic Gov. Roy Cooper had stated during the most recent budget negotiations that he will not sign a budget that does not include expansion, but recently appears to have softened.

This week, legislative leaders plan to vote on a budget that’s been agreed upon by both the state Senate and House of Representatives. The budget, released late Monday, does not include Medicaid expansion, and Gov. Cooper has not yet said whether he would sign the budget. 

Relief for uninsured North Carolinians may come from outside of Raleigh. While details in the federal Build Back Better Act remain vague, the final bill is likely to include provisions that would expand health care coverage to people in non-expansion states by increasing health care subsidies on the marketplace and placing some people on a federal Medicaid system

That bill has yet to run the gauntlet of the U.S. Senate, where key swing-vote senators have expressed reservations about the bill. 

A more “compassionate” and “rational” policy

In practice, Reeder-Hayes said, we’ve already decided that we’re going to treat people who are sick with cancer regardless of if they have insurance or not. 

“We might as well do it in the most compassionate and most efficient and the most economically rational way,” she said. And by that she means Medicaid expansion.

“If somebody walks into our emergency room with a gigantic neglected stage three breast cancer, we’re going to treat her if she doesn’t have insurance,” Reeder-Hayes said. “We’re still going to treat her.” 

“Her care is going to take me a year. It’s going to be very complicated. If she is under 65, and in the workforce population, she is going to be out of work for months,” she said.  

Even if Reeder-Hayes’ patient survives, she may require chronic lifetime care for complications such as lymphedema, heart failure, or neuropathy.

“If I had gotten her when she was a screen-detected breast cancer through having access to health care through Medicaid — instead of being uninsured — I could have treated her and been done in most cases in three months,” she said. “She would be very unlikely to have long term health effects from her cancer treatment, and she would be far more likely to survive.” 

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Clarissa Donnelly-DeRoven covers rural health and Medicaid. She previously worked at the Asheville Citizen Times where she reported on the police, courts, and other aspects of the criminal justice system....