Syphilis cases have been exploding among Native Americans in South Dakota and yet public health agencies are withholding data sought by the tribal health leaders trying to mount a response.
Syphilis rates are up across the country, but they are highest in South Dakota. And in South Dakota, four out of the five people who contract syphilis are Native Americans. Meghan Curry O'Connell, who works for the Great Plains Tribal Leaders' Health Board, is desperate to do something to slow the spread. But she doesn't even always know who's sick in the communities she serves, she told Vox's Keren Landman.
Let's break down the problem:
- Syphilis must be confirmed by a lab test administered at a hospital or a clinic.
- If the test comes back positive, the health care provider is supposed to notify state and federal health agencies — but they are not required to tell tribal public health workers.
- Because Native American tribes are legally sovereign nations, tribal epidemiologists can't themselves access state or federal data on who has tested positive. They have to request that information from the state health department or the federal Indian Health Service.
- Those state and federal authorities are required by law to share data with tribal health officials. In practice, they often don't.
When Keren inquired of the state why not, the health department offered a weak argument that the Native American authorities were not equipped to handle sensitive information. (Tribal officials pointed out that the state and tribes have a long history of sharing information.)
"People don't even realize how little we're able to do if we don't know ... who is sick," O'Connell told Keren.
It is the worst of public health colonialism: Bureaucratic rigidity and paternalism are actively obstructing efforts to stop an outbreak that threatens both adults and infants.
This is the latest in a series of deeply reported articles Keren has written on the syphilis outbreak in South Dakota. I asked her what keeps her coming back to this storyline:
"There's nothing quite like a sexually transmitted disease to show how closely public health is linked with a society's culture. Diseases spread more readily when the activities that spread them are stigmatized — that's culture. And the policies that determine how effectively we respond are weaker when the people [they affect] are systematically marginalized — that's also culture, baby."
Read the rest of her deep dive here.
