GRASSROOTS MOVEMENTS AND HEALTH CARE REFORM
There has been a gap between health care reformers and their potential constituencies, a gap that has created a significant obstacle to popular mobilization on behalf of universal health care. But a large part of the story still needs to be told. If we stop using only the well-known campaigns for national health coverage as a yardstick, grassroots activism and social movements for health care reform become much more apparent.
By grassroots health care activism, I mean movements that include, and are sometimes led by, patients or potential health care consumers, themselves. As opposed to elite health reform, which has relied on research and expertise, health care activism is rooted in people’s experiences with the health care system. Examples from the 20th century include workers’ attempts to establish medical cooperatives and clinics, civil rights activists’ demands for greater racial equality in health care, feminist challenges to gender bias in medicine, and the activism of particular groups of patients, including people with AIDS, breast cancer, and disabilities.
These types of activism have ostensibly focused on a single issue (such as abortion or desegregation) or on demanding benefits for one particular group (such as AIDS patients or the disabled). The reforms they advocated, and in many cases won, made important changes in the health care system but, arguably, did not alter the nature of the system itself. These movements, then, might be described as part of the tradition of pluralism or incrementalism in American health politics, which has generally been seen as an impediment to large-scale reform.22 But the dichotomy between particular and universal reform is sometimes a false one. Through their experiences in the medical system and also their experiences with activism, members of social movements for health reform repeatedly concluded that their demands could be fully realized only with universal access to health care. A recurring theme of health care activist movements has been the broadening of their single-issue and particular demands to include fundamental change in the US health care system.
This theme can be traced as far back as 1913, when the International Ladies’ Garment Workers’ Union (ILGWU) established a Union Health Center in New York City to treat urban clothing workers, who had a high incidence of tuberculosis and other health problems. The Union Health Center was different from physician- and employer-initiated clinics in that it was created and staffed by those who would be using the health care themselves. As the union members who ran the center cared for workers’ immediate health problems, they came to see the need for more universal provision.
Former garment worker Pauline Newman, who headed the Union Health Center for 5 decades, argued that union-run health care threw into sharp relief the vastly greater needs of the unorganized. “[T]he great mass of workers are not in any position to look after their own sickness and their own problems,” said Newman in 1917. “That is why [the ILGWU] is in favor of health insurance and social insurance. We can take care of ourselves, but who are we? A mere hundred and fifty thousand.” Newman and the ILGWU were the most active union supporters of Progressive Era compulsory insurance proposals, and Newman continued to advocate universal health care for the rest of her long life. Similarly, the Western Miners’ Federation, which established a worker-run hospital system early in the century, passed strong endorsements of compulsory health insurance in the 1910s.23 Unlike in the post-1945 era, these private benefits schemes did not draw unions’ energies away from advocating broader reforms; rather, they inspired a comprehensive critique of a health care system that left so many workers without access to medical care or sick pay.
Civil rights activism has often been at odds with elite-led campaigns for health reform. Progressive Era and New Deal reformers deliberately left the mostly Black agricultural and domestic workforce out of their schemes, and the Committee on the Costs of Medical Care excluded Black households from its studies.24 For much of the 20th century, racial discrimination deprived African Americans of basic health care and forced them to concentrate on building their own institutions, like fraternal societies, life insurance companies, and community public health movements.25 And civil rights activists rightly distrusted reform proposals that either explicitly maintained segregation or ensured inequality by other means, such as giving states control over health provision. The National Association for the Advancement of Colored People (NAACP), for example, supported the Wagner–Murray–Dingell bill only reluctantly because the proposal lacked “ ‘safeguards’ to ensure ‘equitable distribution of funds in the states where Negroes and whites [were] forced to use separate hospitals, clinics and other health services.’ ” Decades later, civil rights organizations feared that some aspects of Clinton’s Health Security bill, including the emphasis on employer-sponsored coverage and the inclusion of private insurance companies with their long history of racial “redlining,” might hurt African Americans.26
Still, the goal of universal health care has been an integral part of civil rights agendas. For many civil rights activists, the fight against segregation was inseparable from demands for national health care. Physician and NAACP leader Dr Montague Cobb in 1947 called for the National Medical Association, the organization of Black doctors, to attack racial discrimination in medical care, and also demanded a “vigorous and forthright confirmation” of national health insurance. The NAACP, the National Medical Association, and the Urban League have been longtime, if critical, supporters of proposals for universal medical coverage.27
Civil rights activists have recognized that desegregation in and of itself is insufficient to bring about racial equality in health care. Activist physicians formed the Medical Committee on Human Rights in 1964 to give medical aid to civil rights workers in the South, but they quickly became involved in fighting “inadequacies in health care” in the North as well.28 After winning the hard-fought battle for hospital integration in the mid-1960s, civil rights activists confronted the daunting problems still faced by low-income African Americans in getting medical care. Hospital limitations on care for the poor, and the refusal of many hospitals and physicians to accept Medicaid, demonstrated the link between economic and racial barriers to access. Civil rights groups initiated a series of class-action suits demanding that federally financed hospitals accept more poor patients and continue to serve inner-city neighborhoods rather than fleeing to the suburbs.29 As Black communities were ravaged by epidemics of hypertension, diabetes, and infant mortality, national civil rights organizations helped local activists set up neighborhood health clinics and demonstration projects. Like union clinics earlier in the century, the local health care projects of the 1960s and 1970s worked not only to address immediate needs but also to spread the idea of universal access—the idea that, as one Urban League clinic poster stated, “Good health is a right, not a privilege.”30
The women’s health movement of the 1960s and 1970s is better known for its powerful critique of the sexism of the medical profession than for its advocacy of universal access. Yet feminists early on drew connections between the nature of the health care system and its treatment of women. In 1971, the first edition of the feminist classic Our Bodies, Ourselves argued that profit-driven medicine had led to an epidemic of unnecessary hysterectomies while women without access to primary care died of preventable cervical and uterine cancers. The authors declared, “We believe that health care is a human right and that a society should provide free health care for itself. Health care cannot be adequate as long as it is conceived of as insurance. . . . Health care for everyone is possible only outside of the profit system.”31
Feminists’ demands for safe and legal abortion have been portrayed as emphasizing individual rights, especially since the Supreme Court based its Roe v Wade decision on a “right to privacy,” which some scholars have argued precluded the establishment of a “medical entitlement” to abortion.32 But abortion rights activism could lead to a broader critique of the health care system. In one example, the Young Lords Party, one of the few Puerto Rican nationalist organizations to support abortion access, vocally protested the 1970 death of a Puerto Rican woman during a legal abortion in a New York City hospital. Her treatment at the hands of the public hospital system “proved that legal abortion was not the answer for poor and Third World women who did not have access to quality health care,” and the Young Lords demanded “community control” of city health care institutions.33 Reproductive rights activists found that in a stratified health care system, access to safe and legal abortion was a right in name only.
The women’s health movement has greatly influenced campaigns for national health care. In the early 1970s, the labor-led Committee for National Health Insurance held the first conference on women and universal health care. At that and later conferences, feminist perspectives increasingly altered the reform agenda. Women labor leaders and others noted that the majority of the underinsured and uninsured were women, and that employment-based health coverage implicitly discriminated against women, who were heavily concentrated in sectors with no benefits: part-time, temporary, service, and small business employment and homemaking. Feminists criticized the health care system’s emphasis on high-tech hospital treatment at the expense of primary and preventive care. During the Clinton health reform campaign, the Older Women’s League organized a Campaign for Women’s Health to demand that health reform include primary, preventive, and long-term care and coverage for mental health, HIV testing and counseling, domestic violence screening, and full reproductive health care and family planning. Several of the women’s demands were incorporated into the Health Security bill.34
At no time has the connection between grassroots movements and health care reform been more powerful, and more successful, than during the AIDS crisis. The activism of people with AIDS and HIV fighting for their very lives led to unprecedented changes in the health care system, including speeded-up drug trials, pharmaceutical price reductions, and large increases in AIDS research and funding. AIDS activists’ targeting of researchers and drug companies has been highly publicized and documented.35 Less noticed has been the AIDS community’s growing concern with inequities in the health care system.
ACT UP, the radical organization of people with AIDS and their supporters founded in 1987, at first protested against health and disability insurance companies with HIV exclusions in their policies. But even when some of this blatant discrimination was curbed, most people with AIDS and HIV still could not get access to private insurance because of its extraordinarily high cost. ACT UP’s New York branch formed an Insurance and Access Committee to fight insurance rate increases, and activists began to target insurance companies with highly visible “street theater” actions, including civil disobedience in front of insurance headquarters in New York and the National Insurance Association in Washington, DC. When increasing numbers of people with AIDS were forced to turn to Medicaid, ACT UP worked to expand Medicaid benefits to include important AIDS services and treatments.36
Activists soon became frustrated with these incremental improvements and began to argue for deeper change in the health care system. At a “People of Color AIDS Activist Conference” in 1990, participants were asked to address the continuing problem of “PWAs [people with AIDS] being denied access to life saving services and primary health care” and to consider the question, “What are we doing about the establishment of National Health Care?” ACT UP–New York’s Insurance and Access Committee released the statement, “We believe that in a country with as much [sic] resources as we have that quality health care is a right,” and in 1991 it launched a publicity campaign featuring a poster that read, “Lack of Insurance Kills People with AIDS: Lack of insurance means lack of access to health care, and lack of health care means death.”37
AIDS activists appeared to have won a major victory in 1990 with the passage of the Ryan White CARE Act, which provided significant financing for AIDS services, including primary health care. But conservatives in Congress initially refused to release the funds, using the argument that “they don’t want to take money away from other people who also need it.” ACT UP, infuriated by the legislators’ stance, called for national health insurance, which “should circumvent this debate by guaranteeing treatment and medical care to every American whatever they need.” Only universal coverage would ensure that patients with different diseases and conditions would not be pitted against each other. “National health care is just morally right,” AIDS activists concluded. “That our country has gone so long without it is a scandal.” ACT UP and other AIDS organizations joined state-level and national health reform coalitions and organized marches on Washington to demand universal health care in 1992 and 1993.38 Winning increased health care rights for some led these grassroots activists to see the need for health care rights for all.
TOWARD A SOCIAL MOVEMENT FOR UNIVERSAL HEALTH CARE
Even though a significant number of grassroots movements have advocated universal health care, until recently national health care reformers have had few connections with these constituencies. The distance between elite and grassroots health campaigns, as we have seen, is partly explained by reform leaders’ lack of knowledge of, lack of interest in, or outright exclusion of popular reform constituencies and grassroots organizing strategies. But much of the explanation also lies with the nature of the social movements themselves. For movement activists, other demands have been more urgent, immediate, and even life-and-death than long-term change in the health care system—the right to organize for the labor movement, desegregation for the civil rights movement, reproductive rights for the feminist movement, disease research and drug access for the AIDS advocacy movement. And immediate, local, and incremental reforms have been more politically feasible than more comprehensive change.
But the distance between expert and grassroots health reform has not been insurmountable. Since the social upheavals of the 1960s, health care reform organizations have increasingly recognized the importance of grassroots participation to their cause. From the Health Policy Advisory Center, founded by New Left activists, to today’s Universal Health Care Action Network (UHCAN), created in the aftermath of the Clinton health debate, health reformers have either emerged from or worked closely with grassroots groups and have incorporated community-organizing techniques to build support. Reform proposals are still generated primarily by professional advocacy organizations, but these have increasingly gone beyond the labor–reformer coalition to embrace other popular constituencies, including public health and social workers, nurses, seniors, religious activists, and people with particular diseases or disabilities. While physician health reformers from the 1910s through the 1950s based their appeals on their expert status rather than popular mobilization, reformist doctors now reach out to the wider community as much as to their fellow professionals. The most prominent medical reform organization, Physicians for a National Health Program, founded in 1987 to advocate a single-payer health system, emphasizes its members’ efforts to “work closely with grassroots consumers’, seniors’, and disability rights organizations.”39
Since the end of the Clinton health care campaign, public discontent with the medical system and frustration with traditional reform efforts have led to an upsurge in state-level grassroots activism. Health reform movements are currently active in over a dozen states, from California to Maryland.40 These ballot initiatives and political campaigns for universal coverage appeal to an increasingly diverse support base. Organizers of Oregon’s single-payer Health Care for All initiative, for example, have won the endorsements of groups representing teachers, medical students, churches, tenants, seniors, African Americans, alternative health practitioners, women, and environmentalists, as well as labor unions.41
Even as they expand their constituencies, most state reform campaigns continue to emphasize coalitions of professional advocacy groups as the centerpiece of their organizing strategies.42 In contrast, the activists of Maine’s Citizen’s Health Initiative have chosen to build membership through door-to-door canvassing of individuals rather than the endorsements of the already organized. Maine reformers used these organizing methods, based in the US social movement tradition, to win a major victory: in November 2001, Portland voters approved, 52% to 48%, a nonbinding referendum calling for universal health care in the state. The referendum passed even though opponents, as usual, greatly outspent supporters. The Maine health care reform movement has also adopted ACT UP– style street actions to dramatize its call for universal coverage. When Anthem Blue Cross/Blue Shield of Maine created an insurance-industry front group to fight health reform, activists staged a “raucous” march and rally in front of the company’s Portland headquarters. “Shouting and carrying signs,” the “largely young crowd” chanted “Hey hey, ho ho, corporate health care’s got to go” and booed life-size puppets of insurance executives. Although statewide single-payer legislation failed, Maine legislators plan to reintroduce it in 2003.43
Today’s health care reform movement is diverse in organizing style, membership, and tactics, and even in its goals. Although most campaigns push for a single-payer system, some, including UHCAN and the Maryland Citizens’ Health Initiative, argue that universal coverage could be achieved by other financing methods.44 Whatever their differences, state and national reform groups all agree that a movement for universal health care must rely on grassroots mobilization and the support and participation of local activists. This recurring theme appears in a recent UHCAN announcement: “One key lesson UHCAN has learned in our ten years is that to change the health care system, we need a nationally coordinated movement with deep roots all over the country—roots that extend into the faith community, the labor movement, the health provider sector, and other places where people come together who care about health care justice.”45
Advocates also agree that the constituency for universal access is growing as changes in the health care system break down some of the forces that have fragmented popular support for reform. Employer cutbacks and layoffs are heightening the instability of job-based health coverage. Medicare’s limitations are increasingly obvious as more people enter the system, as health maintenance organizations (HMOs) have dropped Medicare enrollees, and as some doctors have begun to reject Medicare patients as too costly. State budget crises are forcing drastic cuts in Medicaid.46 The workers, seniors, and poor families who were formerly protected by job benefits, Medicare, and Medicaid now have more in common with the uninsured and the underinsured.
State-level campaigns for universal coverage have greater potential for grassroots mobilization than the “patients’ rights” proposals currently languishing in Congress. While patients’ rights has been described as a “consumer movement” of HMO members, this simply points to its limitations. Consumer identity can be a powerful organizing force,47 but basing health care demands on people’s roles as consumers still narrows the constituency for reform: to consume health care, one must have access to it. A consumer-based movement is not necessarily more inclusive than a movement of seniors, of welfare participants, of AIDS or breast cancer patients, or even of the uninsured and underinsured. Like other piecemeal reforms, patients’ rights only leads to the question of why some, but not all, deserve access to health care. State-level reform campaigns, wielding slogans like “Health Care for All” and “Everybody In, Nobody Out,” are working to unify, rather than separate, their potential supporters. “You can’t build a social movement with a Band-Aid philosophy,” argues 73-year-old Ohio single-payer activist and former civil rights worker Jerry Gordon. “Where would civil rights be, with that kind of attitude?”48
