WHITE SUPREMACIST MEDICINE
Minorities face longer wait times for vital lung cancer treatment, study finds
Peer-Reviewed PublicationA new study has revealed significant racial disparities in how quickly minorities with the most common form of lung cancer receive potentially lifesaving radiation therapy compared with their white counterparts.
UVA Cancer Center researchers reviewed data from more than 222,700 patients with non-small cell lung cancer across the country. They found that the mean time to radiation initiation was 61.7 days. For white patients, it was only 60.9 days; for Black patients, it was 65.9 days; and for Asian patients, it was 71.9 days.
These differences can have real consequences, as speedy treatment initiation contributes to better outcomes. A single-week delay in treatment has been associated with a 3.2% and 1.6% increase in the risk of death for patients with stage I and stage II non-small cell lung cancer, respectively.
The troubling findings prompted the UVA researchers to call for further investigation into the underlying causes of the disparities and to urge efforts to ensure equity in treatment access.
“Our results suggest that non-white lung cancer patients have delayed time to cancer treatment compared with white patients, and this is not limited to a particular type of treatment facility," said senior researcher Rajesh Balkrishnan, PhD, of UVA Cancer Center and the University of Virginia School of Medicine’s Department of Public Health Sciences. “Collaboration among providers and community stakeholders and organizations is much needed to increase accessibility and patient knowledge of cancer and to overcome existing disparities in timely care for lung cancer patients."
Cancer Treatment Disparities
The UVA researchers say there may be multiple reasons for the racial disparities. They note that non-white patients are more likely to be uninsured, face greater socioeconomic barriers to care and may be perceived by doctors as being at risk for not following through with their treatment plans. In addition, minorities are more likely to report less satisfaction with their encounters with care providers.
“These findings shed light on the potential presence of and impact of structural racism on patients seeking cancer treatment,” the researchers write in a paper in the scientific journal Health Equity. “Further investigation into the societal determinants that perpetuate disparity in time to radiation therapy, and potential interventions in the clinical setting to improve cultural and racial sensitivity among healthcare professionals, is recommended.”
The longest waits for treatment initiation were at academic health systems, the researchers report. They suggest this may be because patients begin their treatment in community hospitals and other local facilities before they need to be transferred to academic facilities that can offer more complex care.
Racial disparities were found across all types of hospitals, however. White patients consistently had the shortest time to treatment, while Asians had the longest, the researchers report.
Ensuring equity in access to cancer care and improving the quality of that care are major missions of UVA Cancer Center, which this year became one of only 53 cancer centers in the country designated a Comprehensive Cancer Center by the National Cancer Institute. The designation recognizes elite cancer centers with the most outstanding cancer programs in the nation. Comprehensive Cancer Centers must meet rigorous standards for innovative research and leading-edge clinical trials.
UVA Cancer Center is the only Comprehensive Cancer Center in Virginia.
Findings Published
The lung cancer findings have been published in the scientific journal Health Equity. The research team consisted of Akhil Rekulapelli, Raj P. Desai, Aditya Narayan, Linda W. Martin, Richard Hall, James M. Larner and Balkrishnan.
To keep up with the latest medical research news from UVA, subscribe to the Making of Medicine blog at http://makingofmedicine.virginia.edu.
Non-white newborns with cystic fibrosis more likely to be missed in screening
Researchers call for better newborn screens across the U.S.
Cystic fibrosis is missed more often in newborn screenings for non-white than white babies, creating higher risk for irreversible lung damage and other serious outcomes in Black, Hispanic, Asian, American Indian and Alaska Native newborns, a new study finds.
The genetic panels used in newborn screening programs vary by state, but most tend to test for cystic fibrosis gene mutations that are common in white populations while excluding mutations more common in non-white populations, said Meghan McGarry, MD, associate professor of pediatrics at UC San Francisco (UCSF) Benioff Children’s Hospitals and first author of the study, publishing today in Pediatric Pulmonology.
“Newborn screenings are meant to be a public health measure that is equal across populations, but in practice, we are actually creating disparities because children of color are going undiagnosed for cystic fibrosis until an older age,” McGarry said. “That means they are treated later when symptoms occur, and their outcomes are often worse.”
Cystic fibrosis is one of the most common genetic disorders, with about 1,000 new cases diagnosed each year. The disease causes the malfunction of a protein that helps regulate mucus, which can lead to blockages and trapped germs and eventually, infections such as bronchitis and pneumonia. Early diagnosis and treatment can reduce severe symptoms, such as failure to thrive, and is associated with improved nutrition, better pulmonary outcomes, and survival.
Better Screenings Needed
To determine case detection rates, researchers analyzed the genetic mutations of 46,729 people in the 2020 Cystic Fibrosis Foundation Patient Registry, then calculated the rate of delayed diagnosis or false-negative tests by race and ethnicity. They also compared data across states.
In most states, a newborn screen is positive only when at least one disease-causing variant of the cystic fibrosis transmembrane conductance regulator (CFTR) gene is detected. This study found the detection rate of at least one CFTR variant in known cystic fibrosis patients was 56-77% in Asian patients, 73-86% in Black patients, 84-91% in American Indian and Alaska Native patients, and 81-94% in Hispanic patients, compared to 95-97% in white patients. The differences between races and ethnicities were even larger when the tests aimed to detect two CTFR variants instead of just one.
The states with greater racial and ethnic diversity had lower detection rates for each variant panel. Likewise, detection rates were higher overall with genetic panels that included more variants compared to fewer variants, though this wasn’t the case for all races/ethnicities.
“In order for newborn screenings to be equitable, they must include CTFR variant panels that reflect the racial and ethnic diversity of the population,” McGarry said. “Three states--Wisconsin, New York and California--do this well and use full sequencing, as well as systematically monitor and review who is being missed, what variants they had, and whether they should be adding variants to the panels.”
While race and ethnicity are social constructs, the genes that cause cystic fibrosis do vary by race, ethnicity and region, said Susanna McColley, MD, professor of pediatrics at Northwestern University Feinberg School of Medicine and physician at Ann & Robert H. Lurie Children’s Hospital of Chicago, as well as senior author on the study.
“The bias in newborn screening testing is coupled with clinician bias against diagnosis of cystic fibrosis in Black, Hispanic, Asian, and American Indian/Native Alaskan babies that can have fatal consequences,” said McColley. “We hope this work will lead to more equitable screening in all states.”
‘Two diseases’ based on race
About 20% of cystic fibrosis cases are from racial and ethnic minority groups, and the disease occurs in people of all ethnicities and races across the U.S. The delays in detection and treatment for non-white patients has essentially created two diseases, noted McGarry.
“Most white kids with cystic fibrosis nowadays are never hospitalized; for them, it’s an outpatient disease and they will likely live a full life. If you are not white, however, you are more likely to be the one in the hospital all the time with a severe disease,” McGarry said. “We have a young patient now who had a normal newborn screen, and he wasn’t diagnosed with cystic fibrosis until he was on the ventilator and intubated with multiple pneumonias and permanent lung damage.”
The goal is to diagnose children before they are a month old to prevent irreversible harm, she added.
“As early as four weeks, you can already see permanent lung damage. Some even have symptoms in utero, though most undiagnosed babies start having respiratory symptoms around 4-8 weeks,” McGarry said. “There is good research showing that if you can get diagnosed through newborn screening before having a lot of disease—rather than being diagnosed with symptoms—you have much better outcomes in the long term.”
Co-authors and funding: Please see paper for additional co-authors and funding disclosures.
About UCSF Health: UCSF Health is recognized worldwide for its innovative patient care, reflecting the latest medical knowledge, advanced technologies and pioneering research. It includes the flagship UCSF Medical Center, which is ranked among the top 10 hospitals nationwide, as well as UCSF Benioff Children’s Hospitals, with campuses in San Francisco and Oakland, Langley Porter Psychiatric Hospital and Clinics, UCSF Benioff Children’s Physicians and the UCSF Faculty Practice. These hospitals serve as the academic medical center of the University of California, San Francisco, which is world-renowned for its graduate-level health sciences education and biomedical research. UCSF Health has affiliations with hospitals and health organizations throughout the Bay Area. Visit https://www.ucsfhealth.org/. Follow UCSF Health on Facebook or on Twitter
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JOURNAL
Pediatric Pulmonology
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