From Tuberculosis to HIV/AIDS to cancer, disease tracking has always had a political dimension, but it’s the foundation of US public health

The medical community bitterly resisted tuberculosis surveillance. A prominent New York City surgeon argued that surveillance represented a “dictatorial … encroachment” of the health department that threatened to rob physicians of their patients.

But most people were not under the care of a private physician, and tuberculosis surveillance was a way to ensure that the largely immigrant poor living in the tenement districts got referrals to clinics, nourishment and, if necessary, isolation. Despite physicians’ attempts to kill these efforts, there was no public outcry about tracking “the great white plague” despite extensive, sensational coverage of the controversy in the popular press....

An alliance of gay rights leaders and civil liberties advocates was initially able to prevent health departments from undertaking named HIV surveillance. But by the end of the 1980s, there was growing pressure to return HIV/AIDS to “the medical mainstream,” meaning that it could be managed therapeutically like other chronic conditions. As effective treatment became available in the 1990s, opposition faded, and all 50 states required named reporting....

If TB and HIV/AIDS reporting began as histories of resistance, the story was very different when it came to cancer reporting, which lagged far behind infectious disease surveillance.

In the wake of the environmental and women’s movements, citizen activists, mothers of children with birth defects and women with breast cancer became alarmed about the threat of cancer linked to pesticides or industrial pollutants. Women with cancer asserted a “right to be counted.” Although the National Cancer Act of 1971 directed the National Cancer Institute to “collect, analyze, and disseminate all data useful in the prevention, diagnosis, and treatment of cancer,” by the 1980s, 10 states still had no registry.

Vermont’s Bernie Sanders, then an independent member of the U.S. House of Representatives, called for a federally funded program to collect data on cancer in every state. Speaking in support of his bill in 1992, Sanders repeatedly invoked communities’ right to know: “We need to know the age of people who are coming down with cancer. We need to know where they live. We need to know the kind of work they do. We need their racial and ethnic backgrounds.”