Ranking Diseases

From the 1960s to the present, advocates have introduced various criteria to highlight their diseases’ impacts, from mortality to health spending. These competing claims encouraged policymakers to seek formal ways to rank and compare diseases, creating pressure to standardize the National Institutes of Health (NIH) budget across disease categories. NIH officials worried that the pursuit of narrow, disease-specific goals would funnel resources away from basic science and untargeted research. But while the proportion of the NIH budget targeting these goals declined slightly, the overall amounts increased dramatically, suggesting that specialized campaigns do not draw resources away from broader goals. The push for disease data did change how the government distributes money, bringing the funding distribution more in line with mortality rates. The effects of advocacy go beyond securing funding or passing favorable laws; advocacy also changes how policymakers define issues and judge policies, with concrete effects on funding distributions.

Disease Constituencies

In the second half of the twentieth century, disease advocacy evolved from universal campaigns to patients’ constituencies. Changes in the experience of health and illness and the nationwide expansion of political advocacy laid the groundwork for patient-led campaigns. Then, AIDS and breast cancer activists constructed a new type of disease advocacy on the foundations of the gay rights and women’s health movements. Unlike the earlier disease crusades, these movements were led by patients banding together to fight diseases that affected them personally, and they blazed a trail for patients suffering from other diseases. As patients’ activism became increasingly legitimate, disease nonprofits proliferated, patients took over congressional hearings, and disease walks and ribbons became an inescapable feature of American public life.

Introduction

For more than a century, disease campaigns have been the causes Americans ask their neighbors to donate to and the issues that inspire them to march and volunteer. Studies of social movements, interest groups, agenda setting, and social problems tend to focus on contentious politics and study one movement or organization at a time. But these approaches cannot reveal why disease campaigns are the battles Americans can agree to fight, why some diseases attract more attention than others, and how fighting one disease at a time changes charity and public policy. Understanding the causes and effects of disease campaigns, requires studying consensus politics and collecting data on fields of organizations over long time periods.

Charitable Crusades

Disease campaigns have been central to American philanthropy and public policy since the early twentieth century. Combining the appeal of narrow causes and universal beneficiaries, philanthropists and doctors launched enormous campaigns against tuberculosis, polio, cancer, and heart disease. They created a new form of mass philanthropy in which millions of Americans volunteered and donated to solve social problems. This form spread from one disease to another and dominated American charitable giving and voluntarism for half a century. Federal investments in health at the Centers for Disease Control and the National Institutes of Health also grew up around disease categories. These campaigns created a highly skewed distribution of public health dollars. But attempts to distribute money on the basis of public health needs never matched the appeal of single-disease campaigns.

Deserving Patients

The shift to disease patients’ constituencies created new inequalities among diseases. The amount of death and disability a disease causes and the ability of disease campaigners to attract corporate donations tell us surprisingly little about how much advocacy will target a disease. In explaining why some diseases attract more attention than others, ideas and culture matter more than objective conditions. Since not all patients are equally willing or able to mobilize and not all patients are viewed as equally deserving of help, constituency-based activism tends to disadvantage stigmatized diseases in favor of those that create valorized identities. Diseases marked by various types of stigma—preventable, contagious, and mental illnesses—are targeted by much less advocacy than other diseases. The advocates who do target these conditions have more difficulty convincing policymakers and the public that their patients deserve public help.

Conclusion

Disease campaigns reveal why private charity cannot replace political solutions to social problems. Private charity and voluntary campaigns favor narrow, corporate-friendly, and uncontroversial causes. Funneling vast sums of money to awareness campaigns and research into a few favored conditions is an inefficient way to promote collective health and well-being. But it would be incorrect to assume that disease campaigns use up time, resources, and empathy that would otherwise be devoted to solving other problems. Disease campaigns, while not an optimal target for charitable and political efforts, inspire outpourings of beneficence and can help train people to come together to solve social problems.

Publicity Over Prevention, Cures Over Care

Focusing on diseases shapes the types of goals advocacy organizations pursue and the types of laws Congress passes. Over time, the pressure to adopt goals that fit neatly within disease categories, corporate influence, and the strategic avoidance of controversy encouraged disease advocates to prioritize awareness and research over prevention and access to treatment. This creates a health policy portfolio that subsidizes corporate interests, ignores collective risks, fails to challenge inequalities, and may actually make people less healthy by encouraging overtreatment. Yet while only a small proportion of organizations focus on prevention and treatment access, the phenomenal growth of disease advocacy means that large numbers of organizations continue to pursue the latter goals. Narrow goals outnumber broader goals but do not displace them.

Budget Battles

As disease campaigns multiplied in the 1980s and 1990s, critics worried that they would compete with each other for federal funding, stalling the growth of the medical research budget. But even though diseases with the most organized patients secured huge funding increases, disease lobbying rarely became a zero-sum game. Instead, disease campaigns were most successful when the National Institutes of Health budget was growing. When medical research competed with other federal spending priorities, the search for cures won out over more redistributive and politically controversial programs. Combining insights about advocacy and budget politics reveals that advocacy’s effectiveness varies over time, as does the extent to which related problems compete with each other. Specialized claims do not invariably compete, nor do they necessarily doom broader goals.