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Health care disparities remain a major issue in cancer care, and factors contributing to this inequality stretch far beyond access to clinical care.
Health care disparities remain a major issue in cancer care overall and specifically in thoracic malignancies, according to Narjust Duma, MD, who added that factors contributing to this inequality stretch far beyond access to clinical care.
Duma said the onus to address these disparities must not fall on the patients most impacted by them. Instead, oncologists must be at the forefront of the effort to make impactful changes.
“Why are we not talking more about disparities? Because sometimes it’s uncomfortable,” Duma, associate director, Cancer Care Equity Program, thoracic oncologist, Lower Center for Thoracic Oncology, Dana-Farber Cancer Institute, Harvard Medical School, said in a presentation delivered during the 19th Annual Winter Lung Cancer Conference®, an event hosted by Physicians’ Education Resource®, LLC.1 “But I’m not here to make you uncomfortable. I’m here to call you an ally in this fight.”
In her presentation, Duma highlighted the factors that impact outcomes for patients beyond clinical care, the need to increase access and education surrounding lung screening, and how physicians can help elicit change to create equity in cancer care.
Access to care and quality of care comprise only 20% of the formula for health outcomes in patients, Duma said. The County Health Rankings Model shows that physical environment (10%), social and economic factors (40%), and health behaviors (30%) also contribute to patients’ length of life and quality of life (QOL).2
“When people live in housing that is horrible, many of those apartments haven’t been tested for radon in decades,” Duma said. “We did a study in Milwaukee in which we found that some apartments, [which] have hundreds of people living [in them], were never tested for radon since they were built.”
Additionally, Duma pointed to food deserts that impact the diet of various populations. Diet and exercise, plus tobacco, alcohol, and drug use, and sexual activity, have a 30% impact on health outcomes. Social and economic factors play the largest role at 40%, and they include education, employment, income, family and social support, and community safety.
According to the National Cancer Institute, these disparities create adverse differences in cancer measures, such as number of new cases, number of deaths, cancer-related health complications, survivorship, and QOL after cancer treatment.3 Groups impacted by cancer health care disparities reach beyond racial and ethnic minorities, Duma noted.
Other population groups exposed to cancer health care disparities include individuals of different ancestry; individuals of low socioeconomic status; individuals with disabilities; individuals with limited or zero health insurance; individuals from certain geographic locations; individuals in the LGBTIQA+ community; immigrants; refugees or asylum seekers; adolescents and young adults; and the elderly.
“Some people face many of the disparities as they multiply, and I always use myself as an example,” Duma said. “I am a Latina woman and immigrant, with an accent. When you talk about intersectionality of cancer health disparities, they multiply. They don’t subtract.”
Duma presented an example of how disparities can play a direct role in the outcome of a patient. She depicted a male patient with non–small cell lung cancer (NSCLC) with no target mutation, PD-L1 expression of 100%, and an ECOG performance status of 1. Duma said pembrolizumab (Keytruda) would represent an ideal treatment option for this patient, except he has no transportation to the cancer treatment center.
Factors such as poor public transportation in a city, the lack of a personal car, and the expense of a taxi all outweigh the diagnostic factors for this specific patient. “When the patient cannot get a drug, your response rate is 0%,” Duma said.
Annual low-dose computed tomography (LDCT) screening for lung cancer has demonstrated the ability to reduce lung cancer mortality among high-risk individuals, and the practice is now recommended by multiple organizations. The National Lung Screening Trial (NLST) showed participants had a 1.66% risk of lung cancer death in the next 6.5 years, and after 3 rounds of annual LDCT screening, that risk was reduced to 1.33%, equating to a 20% relative risk reduction.4
Screening has decreased mortality for all groups, though it has been particularly beneficial for Black patients. The NLST showed that Black patients were younger, less educated, and had more comorbidities, but they generated the greatest benefit from screening. However, providing access to those patients remains a problem, Duma noted.
“African Americans are less likely to be offered lung cancer screening,” Duma said. “And when you add gender to that, Black women are 6 times less likely to be offered lung cancer screening, compared [with] any other group.”
In July 2020, the United States Preventive Services Task Force updated guidelines to expand LDCT screening eligibility criteria, which aimed to reduce racial and ethnic disparities.5 The 2013 criteria were limited to age and smoking history, which worsened disparities regarding access for various populations.
The updated guidelines expanded the eligible age range from 55 to 80 years to 50 to 80 years, and it decreased the minimum number of pack-years of smoking history from 30 to 20. These guidelines increased eligibility by similar proportions for minority patients (97.1%) and White patients (78.3%).6
“[These guidelines] really improve the inclusion of minorities,” Duma said. “But we need to make sure we create [incentive] for institutions to encourage them to do lung cancer screening.”
However, expanded guidelines alone won’t fix the gaps in screening access and education. Duma pointed to outreach through organizations such as the GO2 Foundation for Lung Cancer, VA-PALS, and Mobile Lung Symposium, as opportunities to expand community knowledge. Duma added the responsibility also falls on oncologists within institutions to add to the discourse between doctors and patients.
“It’s my role and my duty to go to the community to understand what they know about lung cancer screening,” Duma said. “And [I can’t] go and do a survey and then never come back. [We must] develop long-lasting relationships.”
A significant divide remains within racial groups regarding biomarker testing and clinical trial enrollment among patients with NSCLC, according to Duma.
A retrospective study found next-generation sequencing–based testing was performed on 50.1% of White patients compared with 39.8% of Black patients (P < .0001).7 This disparity could contribute to the more than double the rate of participation in clinical trials observed among White patients, since many second-line and beyond trials utilize molecular targets as inclusion criteria.
Duma stressed that if this testing isn’t done proportionally across populations, developments of new drugs and molecular testing won’t be as significant.
“If we don’t test patients, [clinical trials] won’t be able to recruit,” Duma said. “And we keep talking about how we lack representation of minorities in clinical trials and how we are extrapolating data from a predominantly White, male population to treat the rest of the world. If we don’t test these patients, how are we going to include them in clinical trials?"
Despite the gap in testing based on race, racial and ethnic factors are not the only influence on disparities in cancer care. A 2020 study led by Duma concluded socioeconomic factors, rather than race or ethnicity, appeared to influence the refusal of cancer treatment in patients with stage IV NSCLC.8
The study found that factors for patients refusing radiotherapy included Medicaid or Medicare as primary insurance; uninsured status; low household median income; and lower educational level. Factors for refusing chemotherapy included no insurance; being on Medicaid; and having a high comorbidity index.
“We found out that the main reason patients were refusing therapy was the fear of leaving debt behind to their families,” Duma said. “In subsequent groups, patients told us, ‘I know I will live significantly less, but I don’t want to leave my family with so much debt.’ These patients are facing the decision of living or death.”
Duma continued to discuss a 2018 study that showed only 2.2% of Hispanic patients with stage IV NSCLC were referred to palliative or supportive care services.9
Duma appreciated that many English-speaking doctors took Spanish classes in high school. When it comes to relaying crucial information, she said to call for help.
“That’s not enough to explain a chemotherapy regimen,” Duma said. “Call the interpreter. Don’t use the family. Call the interpreter.”
Duma also presented guidelines for speaking to patients when there is a language barrier. Those included establishing a bilingual service with Spanish-speaking staff, engaging with family members, providing patients with existing Spanish-language tools to allow better assimilation of information, and developing culturally tailored patient navigation programs and multidisciplinary interventions.
Finally, Duma stressed the need for doctors to stand at the frontlines in the battle against disparities in cancer screening and care. She said every person has a role to play, and doctors need to take responsibility.
“We have to create materials that are in several languages, because we’re expecting patients to understand high-level information in a language [that doesn’t] feel familiar,” Duma said. “A lot of the lung cancer screening materials still have not been translated, not only to Spanish, but many other languages. Another thing is we need to go to the patients. We do it with mammograms. Every hospital has a Mammovan. We should have a lung van ... [so that] we [can] go to patients. And finally, we need to [start] taking the responsibility off the patients and giving it to us.”