Correction: This story erroneously attributed a statement regarding effects of the H1N1 flu virus in American Indian/Alaska Native populations to U.S. Health and Human Services Secretary Kathleen Sebelius. The article stated, “At the time, Sebelius said the effects of H1N1, according to anecdotal data she received, did not appear to have played out as badly for the Indian population as had been feared earlier in the year.” A transcript provided by HHS demonstrated that Sebelius made no such remark, and made no others that would have refuted a Dec. 11 CDC report on the disproportionate number of H1N1 deaths in AI/AN populations.

WASHINGTON – In September, the top health official in the nation told tribal health professionals that it appeared Native Americans were not suffering from the effects of H1N1 flu at as high a rate as had been previously feared. Now, the Centers for Disease Control and Prevention released a report indicating that American Indians and Alaska Natives have made up a disproportionate number of deaths from the virus.

The CDC’s Morbidity and Mortality Weekly Report, issued Dec. 11, found that 426 people in 12 states died from H1N1 between April 15 and Nov. 13. A substantial number – 42 – were AI/AN.

The report noted that the deaths made up 9.9 percent of all cases, although AI/AN represented only about 3 percent of the general population in the states studied. The states were Alabama, Alaska, Arizona, Michigan, New Mexico, North Dakota, Oklahoma, Oregon, South Dakota, Utah, Washington and Wyoming.

“In all age groups, the AI/AN death rate was higher than the rate for all other racial/ethnic populations combined,” the authors wrote. The highest death rates were experienced by infants and elders.

The hard numbers appear to conflict a preliminary assessment Secretary of Health and Human Services Kathleen Sebelius provided to tribal health leaders at a Sept. 15 National Indian Health Board conference in Washington.

At the time, Sebelius said the effects of H1N1, according to anecdotal data she received, did not appear to have played out as badly for the Indian population as had been feared earlier in the year.

Sebelius in no way said that tribal communities should therefore lesson their efforts to prevent the disease – but some health leaders, presented with the new science-based mortality data, said she should have been more careful about relying on anecdotes.

“At the time she said that, this science-based report wasn’t out, it was just being gathered,” said Joe Finkbonner, executive director of the Northwest Portland Area Indian Health Board. The organization helped collect and analyze data for the CDC report.

He noted that racial health data, especially among American Indians, tends to be difficult to collect and assess – but that doesn’t mean anecdotal data should be a replacement.

“Now we have this concrete information – Indians have been disproportionately affected by H1N1. This reliable information is now at the secretary’s fingertips.”

Despite Sebelius’ reliance on anecdotal evidence, her marching orders were clear: Indian populations appeared at-risk for the virus, and every attempt should be made to inform and vaccinate them.

“We need your help to keep folks safe and secure,” Sebelius told tribal leaders at the conference, later demonstrating an elbow-to-elbow “flu bump” with Reno Keoni Franklin, the organization’s chairman.

Finkbonner said the secretary never implied that Indians were protected from the disease; she simply didn’t have the full scientific information before her to reflect on the situation more thoroughly.

Jessica Santillo, HHS spokeswoman, said she did not believe it was Sebelius’ intention to leave anyone with the impression that the virus was not serious in Indian country.

Glen Nowak, CDC spokesman, said it has been clear through the department’s actions that H1N1 in tribal communities is a health threat that needs to be taken seriously.

He said Sebelius’ reliance on anecdotal data was not necessarily wrong, as H1N1 affected “different people, in different places, at different times.

“The secretary wouldn’t have known CDC’s specific data at that time, as we were still in the process of compiling the data.”

Nowak compared it to a hypothetical situation where a survey that is 40 percent complete might tell an entirely different story than when it is 100 percent complete.

He hopes no Indian health officials left the conference thinking they could be lax about the situation.

Finkbonner believes tribal officials should have walked away realizing that H1N1 was a priority.

He also said that in September President Barack Obama’s science advisory council released a report saying Native American populations were considered at elevated risk of severe outcomes from H1N1 infection due to their populations being “historically at high risk for severe respiratory infections,” and based on data from other indigenous populations.

Given that Sebelius is the top health official in the country, some tribal health experts said she should have been more careful. Before this situation occurred, many Native Americans have been critical of federal health officials and their response to Indian health issues, especially considering historical screw-ups.

One need not look that far back in history to remember a mistake Canadian government officials made involving Indians and H1N1 over the summer.

It was widely reported that Canadian health officials included dozens of body bags in shipments of medical supplies they sent to First Nations communities hit hard by the virus. The incident spawned nationwide outrage and a government investigation.

Still, some in Indian country say Sebelius shouldn’t be blamed too harshly.

“The data didn’t come out until very recently, so she didn’t have the evidence-based data that we have now – she just didn’t have the correlated information. I can’t really fault her because the data just came out,” said Jessica Burger, director of government relations for NIHB.

Burger also said the Obama administration has held regular calls with tribal leaders focused on the flu, and has released weekly reports so current information is given to tribal officials.

But the existence of those weekly reports leads to more questions about what Sebelius knew and when she knew it. For much of the summer, the reports had been indicating that negative effects of the flu in Indian country were expected to be higher than average.

John Redd, an IHS epidemiologist who helped author the mortality report, said the disproportionate death rates in Indian country were “definitely not a surprise” to the agency, although their magnitude was alarming.

“We had, through the course of the summer, been documenting incidence clusters of outbreaks, and we had a somewhat high cluster outbreak in Arizona.”

But Redd said it would have been difficult for Sebelius to have offered a full picture of the flu’s death rate among Indians in September.

He said rates of Native exposure to the disease had been comparable to the general population in many regions, but Indian death rates ended up being higher. A variety of social factors, like poor housing conditions, could have played a role in that outcome.

The takeaway point from the report, a variety of health experts said, is that Indian country needs more H1N1 support and resources.

Redd said it is still of utmost importance for tribal communities to take this strain of flu extremely seriously, and he said it is a goal of IHS to counter the perception that it was ever a mild or unimportant outbreak.

“It’s important to keep going with the vaccine,” he added, saying that it is widely available at IHS facilities.

Burger said the report’s devastating statistics clearly demonstrate that resources need to be dedicated directly to tribes to combat the problem. The system that has been in place forces tribes to work with states, which creates sovereignty complications in some instances.

“We need to be ready for the next round. Hopefully, as the new data gets considered, changes will be made, and there will be a heightened call from the Obama administration.”

Finkbonner’s take-home message is that Indian people cannot afford to become complacent.

“There’s still plenty of time to get the H1N1 vaccine – get your vaccination if you have the opportunity, that’s the message.”