When Susan Shinagawa found a pea-sized lump in her right breast, she said her doctor refused to diagnose her with cancer because, she recalled him saying, “Asian women don’t get breast cancer.” She said a second doctor told her, without performing a biopsy, that he could say with “99.9 percent certainty” that she did not have breast cancer.

The doctors’ biases were fueled by aggregated research data that obscured alarming gaps in health outcomes between different Asian subgroups. The National Cancer Institute, for instance, had reported that Asian Americans and Pacific Islanders, as an umbrella group, had the lowest breast cancer incidence and mortality rates. Shinagawa, then 34, said both doctors initially dismissed her request for a biopsy, but when one acquiesced, the results showed that she did in fact have cancer. 

According to a new article in the Journal of the National Cancer Institute, Shinagawa isn’t alone. The commentary, published in April, reveals how structural racism and aggregated data perpetuates cancer disparities among Asian Americans, who are the first racial group to experience cancer as the leading cause of death. (Heart disease is the leading cause of death for all Americans, according to the Centers for Disease Control and Prevention.)

Aggregated data is just one issue.

“There’s a conspicuous omission of Asian Americans in clinical trials and scholarship funding is a reflection of institutional racism,” Moon Chen, the paper’s lead author and a professor of hematology and oncology at UC Davis Comprehensive Cancer Center, told NBC Asian America.

From 1992 to 2018, the National Institutes of Health invested less than 0.2 percent of its total research budget on Asian Americans, the fastest growing racial group in the U.S. that now makes up 7 percent of the population. Yet Asian Americans constituted only 2 percent of participants in clinical cancer trials conducted between 2015 and 2019.

Chen said a host of “unusual” cancers, such as those of contagious origins, disproportionately affect people of Asian descent. Some of these high rates can only be seen through disaggregated data: Korean Americans, for example, experience the highest rates of stomach cancer, possibly attributed to kimchi consumption. Vietnamese American women experience the highest rates of cervical cancer, possibly linked to human papillomavirus. Chinese Americans experience the highest rates of nasopharyngeal cancers that is likely connected to consumption of salted fish. Among never-smokers of all ethnicities, Chinese women also have the highest incidence of lung cancer. 

“These kinds of health issues that affect us are not researched,” Chen said. “Who’s interested in the prevalence of lung cancer among nonsmokers?”

The paper also addresses the ways in which the Covid-19 pandemic has exacerbated existing language and cultural barriers. Because of the rise in anti-Asian violence, many women and seniors, in particular, have not been going to health screenings because they’re afraid to leave their homes. Quarantine regulations have also delayed cancer care, Chen said, since in-person health appointments dropped by as much as 80 percent.

Shinagawa’s experience set her on a lifelong path of advocacy and education. In 1998, she co-founded the Asian and Pacific Islander National Cancer Survivors Network, a group that provides referrals to cancer support and survivorship services. But at a recent public health panel, an Asian American breast cancer survivor told Shinagawa that her doctor also prematurely ruled out a breast cancer diagnosis because of her race.

“It flabbergasted me that 30 years later doctors are still saying the same thing,” Shinagawa, now 65, said. “It made me wonder, ‘Was it a waste of time that I did all this work?’”

Three decades after Shinagawa was diagnosed with breast cancer, the National Cancer Institute is still putting Asian Americans and Pacific Islanders under one umbrella group. In addition to disparities among ethnic groups, improper aggregation also masks significant differences based on migrant status and acculturation level. A 2010 study by epidemiologist Scarlett Lin Gomez found that U.S.-born Chinese and Filipina women in California have higher breast cancer rates than non-Hispanic white women, who have the highest overall incidence rate among all racial groups. (Asian American women as a whole have a lower incidence rate than whites, though it’s been steadily increasing over the past two decades.)

Shinagawa said the National Cancer Institute should spend more money on studies focused on Asian American populations and disaggregate the data collected. Perhaps most importantly, she said, the agency should invest in research on why some Asian ethnic groups seem to have much lower cancer rates than other groups, and determine protective factors. On the clinical side, she continued, doctors should screen Asian patients for cancers of contagious origins and order vaccines for viruses that cause them.

“It’s really an institutional bias against Asians, partly from this lingering racism from the get-go” she said. “Our problems never make the headlines.”