Equitable Access to Biomedical Advances: Getting Beyond the Rights Impasse

Authors

Wendy K. Mariner, Boston University School of LawFollow

Document Type

Article

Publication Date

Spring 1989

ISSN

0010-6151

Publisher

University of Connecticut School of Law

Language

en-US

Abstract

In 1988, gay rights activists and supporters demonstrated outside a Food and Drug Administration building demanding unrestricted access to experimental drugs being tested for the treatment of human immunodeficiency virus ("HIV") infection and acquired immunodeficiency syndrome ("AIDS").² Across the ocean in France, in October of the same year, came an equally insistent demand from women's groups, scientists, and family planning agencies that the pharmaceutical company Groupe Roussel Uclaf put its abortifacient RU 486 back on the market.' Early in 1989, people were outraged when newspapers reported that New Hampshire's Medicaid program would not pay for a life-saving bone marrow transplant for a six-year-old boy. ⁴ The notion of a "right" to health care, long discredited by legal scholars as a naïve misunderstanding of the law of health care,5 found expression in these public outcries. What they seem to be saying is that some medical therapies or products are so important they ought to be made available.

Public demand for health care is not new. Public opinion polls consistently report that people want more health care and are willing to pay for at least some of it.⁶ What is new is the success such groups are beginning to achieve. The National Leadership Commission on Health Care recently released its report embracing the goal of providing universal basic health insurance in the United States. Its report followed closely on the heels of renewed proposals for different forms of financing universal health coverage.' The Commonwealth of Massachusetts has already enacted legislation to provide health insurance for its uninsured citizens.⁹ Several scholars have laid the groundwork for a national system of health insurance. The pendulum is swinging back again to a focus on the need for ensuring that health care is available to all in need.

But as we move closer to creating a system for providing basic health care for all, we will be forced to confront the more difficult and specific questions of what should be included in the package of basic services and what can be excluded. It is with services at the margin of the basic health care package and beyond that I shall concern myself here-for two reasons. First, there is at least some consensus on the core package of services that ought to be made available to all in need, regardless of ability to pay.¹² It is likely that within the next decade the United States will establish some mechanism-public or private or probably a mixture of both-for providing access to such services.¹³ Thus, defining the essential core services is not likely to create intractable controversy. In contrast, there is little consensus on whether to include in the basic package services that provide some clear benefit but which are very expensive or can be used by only a small segment of the population (for example, orphan drugs, kidney dialysis, or organ transplantation) or that are objectionable to a small segment of the population (for example, in vitro fertilization, embryo transplants, or abortion). Thus, the advent of universal health care coverage probably will not abate controversy over these "services at the margin" and beyond.

The second reason for focusing on these "services at the margin" and beyond is that biomedical science may be expected to provide us with a stream of new products and services of varying benefit and cost. Thus, we will be confronted repeatedly with the question of whether the latest biomedical technology should be included in the package of basic health care services to be made available to all, whether it should be deemed an "extra" to be made available only on the basis of ability to pay, or perhaps whether it ought to be withheld as inimical to the public health or welfare.

This article argues that it will be difficult to produce principled answers to such questions. As we cast about for answers, we find that there are, in the United States, few generally agreed upon principles to guide our inquiry. Demands for access to new biomedical advances surface abruptly and are asserted with great emotional force by identifiable people. But existing legal rights simply do not embrace entitlement to particular medical services or products. This article takes a closer look at the cases of new drugs for AIDS and of RU 486 to illuitrate the demand for new biomedical technologies and the legal system's current inability to resolve claims of entitlement thereto. It examines the limitations of the concept of individual rights as a means to define what ought to be made available on what terms and suggests that the problem might better be studied as one of governmental responsibility for assuring equitable access to categories of health care. Finally, it sketches some of the questions that should be asked to begin to define the nature and scope of governmental responsibility.

Recommended Citation

Wendy K. Mariner, Equitable Access to Biomedical Advances: Getting Beyond the Rights Impasse , in 21 Connecticut Law Review 571 (1989).
Available at: https://scholarship.law.bu.edu/faculty_scholarship/1854