Health and unequal opportunity: the battle for federal dollars.

• Author: Viano, Emilio

Heavy lobbying by activists is helping to divert funding to a few specific diseases at the expense of others.

Power or the lack of it is at the root of all consumer issues. Traditionally, in health care, the greatest influence has been enjoyed by the providers - the medical and insurance establishments - that control information and limit personal choices. Individuals often have been forced to deal with the health care system on its own terms, their power supplanted by powerful professionals, third-party insurers, and governmental fiscal policies. However, a strong backlash has been developing, in part inspired and supported by previous movements such as civil rights and welfare reform, consumer coalitions focusing on goods and services, and the drive by nurses for more recognition and control.

To motivate people to look at health care critically, consumer activists have compared it with other goods and services that impact Americans' lives. People want a say in how they live and die. They are concerned about the economic threat stemming from health care. Many also have begun to see health as a right of everyone. The major difficulty is that the public and the experts have utterly different explanations of why there is a problem in the first place, and thus widely divergent expectations of what health care reform should accomplish.

Revamping health care presents the same complexity and financially divergent interests as revising the tax system, except that it is people's lives hanging in the balance. Illness, health, birth, life, death, and a huge deficit are an explosive mix for high-stake politics. This is particularly true in these times of budget cuts. When financial resources are scant, what is the relative importance of AIDS research, children's vaccinations, yearly mammograms, annual checkups, and costly care for the aged?

In many ways, systems already are in effect that control access to and denial of health care, using age, for instance, as a criterion for restricting benefits. Who decides and how? Also, money spent on health care can not be used for farm subsidies, industrial research and development, education, or low-cost housing.

Even in those cases where there is a clear majority agreeing on the proper response, well-organized and vocal minorities can have a substantial and even overriding impact on the outcome of the debate. There are many "publics" in any controversy: voters, taxpayers, special interest groups, community organizations, and patients and their relatives and supporters. The concerns of scientists, politicians, regulators, clients, practitioners, and interest groups at times converge in different configurations, but often clash.

These conflicts may slow down or accelerate progress in science and medicine. Inevitably, conflicts occur not only among clients, their advocates, and the health research and care establishment, but also between groups representing consumers. Even when there is no open competition, the demands and actions of one particular group may lead to an unfair allocation of funds and resources that ultimately will impact everyone negatively.

Acrimonious debates and heated clashes have characterized the consideration of a number of health issues such as measures to combat the HIV and AIDS epidemic; the proposed introduction of RU-486, the so-called French abortion pill, into the U.S.; Congressional action on the human genome project; the enactment of Section 2991 of the Social Security Amendments of 1972, establishing an entitlement program for victims of end-stage renal disease; Federal support for human fetal tissue transplantation research; and genetic experimentation and the use of recombinant DNA technology.

The best example of the power of consumers and their advocates on health care organization, provision, financing, and research is the success of AIDS activists in obtaining expedited approval of drugs, lower prices for medicines, and increased funding for research and care. The scientific systems and procedures in the case of AIDS have been affected and changed by the unprecedented involvement of those impacted by the illness. The entrance of AIDS activists into the health care arena has introduced a strident dimension to what previously was a decorous and urbane dialogue between patient advocates and doctors, researchers, and policymakers.

The unconventional style of operations of some AIDS activists provides a rich study in contrasts: street theater and bullying on the one hand; well-researched position papers and meticulous bargaining on the other. The actions and successes of AIDS...