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The trouble with disease awareness campaigns

In October, pink ribbons promoting breast cancer awareness decorate everything from sneakers to buckets of fried chicken. In addition to breast cancer, October is simultaneously ADHD Awareness Month, AIDS Awareness Month, Down Syndrome Awareness Month, Rett Syndrome Awareness Month, and Selective Mutism Awareness Month. Campaigns to raise awareness about diseases have been a major feature of American public life for more than a hundred years, dating back to the early twentieth-century crusades against tuberculosis.

These campaigns have many goals—decreasing stigma, encouraging public funding and private donations for research, and encouraging healthy behaviors. Often, the hope is that awareness will save lives by encouraging screening, early diagnosis, and effective treatment. This seems so self-evidently true that it’s hard to imagine ever having too much awareness. But all medical interventions come with risks and side effects. For people with no symptoms and low risks, like those with slow-growing cancers, benign abnormalities, or mildly elevated blood pressure, the harms of treatment can outweigh the benefits. Overblown awareness campaigns can literally make us sicker by exposing us to risky, harmful, and unneeded medical care.

Disease nonprofits and pharmaceutical companies both have incentives to maximize awareness, even when this means overlooking scientific evidence of the risks. In the early days of the twentieth century, a tuberculosis campaigner explained that education campaigns should create “an enlightened public opinion in which everyone is frightened just enough to act sensibly, and not enough to act foolishly; just enough to insure necessary public appropriations and private donations.” Another leader explained that scientific uncertainties should be hidden from public view; campaigners should “adopt our creed and doctrines and present them to the laity as though they were unanimously adopted and almost spontaneously created. Our controversies of orthodoxy and faith should be reserved for the inner chambers of our scientific and professional conferences.” (Edward Devine, 1905, and George Palmer, 1915, quoted in Teller, The Tuberculosis Movement, 56–57.)

Public messages about cancer have been similarly shaped by the desire to maximize medical testing and public donations. From its birth in 1913, the organization now called the American Cancer Society sought to find a “middle ground between too much hope and too much horror” that would maximize donations (Thomas Debevoise, quoted in Ross, Crusade, 24–25.) In the 1990s and 2000s, federal warnings that routine mammograms for women under 50 caused more harm than good were greeted with a chorus of criticism from breast cancer advocates. Leading cancer organizations continue to recommend annual mammograms for women in their 40s. Similarly, when the US Preventive Services Task Force warned that indiscriminate prostate specific antigen testing does more harm than good, prostate cancer advocacy groups continued to recommend the screenings. Ironically, the people who are most harmed by screening—the ones who undergo difficult, disabling, and disfiguring treatments for cancers that would never have killed them—often believe that screening saved their lives, detecting cancer while it could still be cured.

Drugmakers and other healthcare corporations also sponsor awareness campaigns; they stand to profit when awareness encourages more people to be screened and treated. Pharmaceutical companies fund patients’ organizations that encourage people to seek diagnoses; mammogram machine manufacturers fund the American Cancer Society. The pharmaceutical company now known as AstraZeneca, which manufactures a blockbuster breast cancer drugs, created Breast Cancer Awareness Month. They profit when awareness campaigns lead more women to be diagnosed early and spend more years taking Tamoxifen.

But although financial and corporate incentives push disease campaigners to overemphasize awareness, there are promising countertrends. Feminist and environmental breast cancer activists have often been harsh critics of the “screening orthodoxy” and have brought attention to environmental carcinogens. And rather than being crowded out by mainstream breast cancer campaigns, these activists can capitalize on them, as when Breast Cancer Action launched a campaign against carcinogenic chemicals during Breast Cancer Awareness Month.  Mainstream disease advocacy organizations can also pull back from the orthodoxy of early detection. In 2002, the National Breast Cancer Coalition stopped recommending routine mammograms for younger women. The American Cancer Society’s new chief medical officer has shown an unprecedented willingness to question screening, saying that “the advantages to screening have been exaggerated” and “we are actually hurting people with overtreatment.” (Brawley, “Quotation of the Day”; Otis Brawley, quoted in Parker-Pope, “Plenty of Blame.”) Being aware of diseases need not only mean more and more screening and earlier diagnosis; we can also investigate ways to prevent disease and ensure equitable access to treatment.

Featured image credit: pink ribbon by marijana1 via  Pixabay

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