Annual cancer statistics reported by the American Cancer Society are concealing health risks for Native Hawaiians and Pacific Islanders, say Hawaii physicians and organizations.
Used as a guide by health care providers and institutions, the society’s Cancer Facts and Statistics report lumps cancer data for Native Hawaiians and Pacific Islanders together with that of the much larger population of Asian-Americans. According to the U.S. Census Bureau, the Asian-American population in Hawaii is nearly four times larger than that of Native Hawaiians and Pacific Islanders. Across the United States as a whole, there are roughly 1.5 million Native Hawaiians and Pacific Islanders, but 20 million Asian-Americans.
As a result, the data in the American Cancer Society report can be misleading, critics say. For example, the report lists cancer as the leading cause of death for Asian-Americans, Native Hawaiians and Pacific Islanders aggregated as a group, accounting for 27 percent of deaths between 2011 and 2013.
However, a 2010 study by the federally-funded Cardiovascular Risk Clinic found that the leading cause of death for Native Hawaiians is actually heart disease. And Lana Kaopua, an associate professor with the Cancer Prevention and Control Program at the University of Hawaii Cancer Center, said in a telephone interview that heart disease remains the leading cause of death for Native Hawaiians.
JoAnn Tsark, project director for Imi Hale Native Hawaiian Cancer Network, said that the ACS data does not accurately reveal the most serious health concerns or the most encouraging findings for the individual ethnic groups whose data is aggregated together.
The American Cancer Society report lists cancer as the leading cause of death of Asian-Americans, Native Hawaiians and Pacific Islanders. But the leading cause of death for Native Hawaiians is actually heart disease.
“For breast cancer, while incidents or number of cases [for Asian-Americans] may be high, their mortality, death rates, are lower; but that is not the picture when we look at Native Hawaiians,” said Tsark.
Although the cancer society reports that breast cancer rates are 30 percent lower for Asian-American, Native Hawaiians and Pacific Islanders than for whites, the Cancer Research Center of Hawaii’s Hawaii Cancer Facts and Figures says that breast cancer incidence for Native Hawaiian women is 60 percent higher than for Chinese-Americans and 12.4 percent higher than for Japanese-Americans.
The Hawaii report also says state breast cancer mortality rates for Hawaiians are 127 percent higher than for Chinese-Americans and 85 percent higher than for Japanese-Americans, while the cancer society says the mortality rates for Asian-Americans, Native Hawaiians and Pacific Islanders as a group is 50 percent lower than for Non-Hispanic whites.
“It looks as if we have no issues; but we do,” said Tsark.
She said Native Hawaiians are aware of the health concerns within their community, but the report can affect how education programs are created and how grants and other resources are disbursed because others may see no issue.
Tsark says the state mortality data points to a difference in access to healthcare services and other social determinants of health, something the cancer society report’s aggregated date hides.
“To improve health you need to know where to target, what disease to target, how to target it, who to target first, all of that,” said Kaopua, at the University of Hawaii Cancer Center. “You need money to find those things out, but you also need the research to get the funding.”
Otis Brawley, chief medical officer for the American Cancer Society, said that although he agrees Native Hawaiian and Pacific Islander data should not be grouped with Asian-Americans, federal regulations effectively require them to do so.
“Part of the reason we have to publish aggregated data is the Office of Management and Budget of the White House, two years before every census, defines the categories that are going to be used in the census and those categories are then used for our denominators,” said Brawley.
He said recipients of National Cancer Institute grants have to publish data that is related to the NCI’s “Surveillance, Epidemiology, and End Results Cancer Statistics Review,” which groups Asian-Americans with Pacific Islanders.
However, the OMB revised its Statistical Policy Directive No. 15 in 1997, splitting the Asian or Pacific Islander category into two categories: Asian-American; and Native Hawaiian or Other Pacific Islanders.
The decision was based on arguments from Native Hawaiians, who said data should recognize their distinct social and economic situations and monitor racial discrimination.
“So this is a law. Federal agencies were mandated to comply with the law by 2003; but clearly some of the reports, not just by the American Cancer Society, but others coming out of other federal agencies, do the same thing, said Tsark. “They aggregate Asian and Pacific Islanders because they’re looking for the big number. I think they’re not thinking forward about how meaningless that number is and also how damaging that number is.”
While the ACS report acknowledges that Asian-Americans and Native Hawaiians and Pacific Islanders have “two very different cancer profiles and cancer rates,” it says demographic and health data is usually only available combined and therefore should be interpreted with caution as it has its limitations.
“To improve health you need to know where to target, what disease to target, how to target it, who to target first, all of that.” — Lana Kaopua, associate professor, Cancer Prevention and Control Program, University of Hawaii Cancer Center
The cancer society report also says health statistics are grouped because of limited data for racial and ethnic subgroups, incorrect or incomplete demographic information for minority health patients and the challenges of calculating statistics for racial or ethnic subgroups that are evolving fast.
“I think they’re not thinking forward about how meaningless that number is and also how damaging that number is.” — JoAnn Tsark
Brawley also said that the cancer society does receive ungrouped incidence data, but that he also would need ungrouped mortality data to really analyze the Native Hawaiian issues.
“If I were to give you a number, it would be a made up number because no one has given us the raw data to actually analyze,” said Brawley.
He said that accuracy is more important than “getting the numbers out there,” and that if he were given the mortality data, he would make ungrouping Asian-American and Pacific Islanders a priority.
Tsark said that they understand the limitations that come with gathering statistics for a specific racial or ethnic group, but if organizations cannot provide accurate data, Native Hawaiian statistics should be left out.
“What we say is, we want you to have a robust number but if you can’t, don’t lump us together so you that you can write a paper,” said Tsark. “It would be better to leave us out and say that data does not allow us to make comparisons because we don’t survey enough people.”