AIDS Activists Shake Up the Medical Establishment Other Groups Are Learning the Uses of Confrontation to Raise Funds and Consciousness

JOAN BECK

January 14, 1992|By JOAN BECK

CHICAGO. — Chicago -- Sobersides medicine has never seen anything like the most virulent of the AIDS activists. With a raunchy blend of guerrilla theater, civil disobedience and deliberate offensiveness, groups led by ACT UP (AIDS Coalition to Unleash Power) and others have disrupted scientific meetings and shouted down the very researchers trying to help them.

They have stormed into solemn worship services to protest church inaction and disrupted the New York Stock Exchange. They have taunted police. Lain in the aisles at scientific meetings fondling each other. Screeched at speakers as prominent as Cabinet members until they left the podium. Hogged TV coverage. Picketed. Protested. Batted inflated condoms around sports stadiums. Demanded cures, immunization, medical care, disability payments and money with threatening insistence.

Despite some fears of backlash, the ugly activism has worked. Medicine will never again be the same. And there may be lessons and benefits for all of us in this strange chapter in medical history.

The current issue of the New England Journal of Medicine, a major voice of establishment health care, acknowledges the ''jarring new dimension'' AIDS activists have added to ''what was previously a genteel dialogue between patient advocates and clinicians, researchers and policy makers.''

AIDS activists have pressured research into unprecedented urgency and concentration with their demands. They have insisted on and gotten far more than a fair share of money for research and care. In 1990, when 40,000 Americans died of AIDS, federal spending on the disease totaled $1.6 billion. By comparison, cancer research, for a disease with an annual death toll of about 500,000 people, received $1.5 billion and heart disease, despite 750,000 annual deaths, got less than $1 billion.

''Money spent on AIDS was money not spent on something else,'' said the journal article. ''The more hours that were used to expedite trials of antiviral agents and FDA evaluations, the fewer were available for other worthwhile pursuits.''

AIDS activists are also changing the way fund-raising to fight diseases is being done. For decades, the model has been the March of Dimes' success in conquering polio by soliciting money for research from the public, using the prestige of prominent people and the appeal of cute little poster children. Scores of such groups, each concerned about a specific health problem, now follow this pattern, most with little real success.

Now, AIDS groups have shown there is a quicker way, using all the strategies of political activism to shake billions out of the deep pockets of the federal government. Women's groups are beginning to use such tactics to demand more resources -- and results -- in fighting breast cancer. And some senior-citizens' organizations are gearing up to battle for more progress in dealing with Alzheimer's disease.

''The success of AIDS activists demonstrated that decisions about the allocation of resources -- even in health care -- are inherently political and thus amenable to effective lobbying,'' says the journal.

That fact will be more important in future years, as the federal government takes on more responsibility for the nation's health care. And it is likely to skew the distribution of resources more unfairly.

AIDS hit first at gay groups, already flexing their political muscles, used to battling against discrimination. HIV infections also impact slowly, generally leaving victims -- usually in early midlife -- years in which to be active on their own behalf.

Most other diseases affect people with little else in common, often children or seniors, usually with little clout or political expertise. Their polite patience and amateur fund-raising will have to be organized and energized into a widespread health-advocacy movement to stand a chance against the AIDS-model activists in coming years.

The spin-offs of AIDS activism most beneficial to other Americans are changes in how drugs are tested, approved and priced. AIDS groups are unwilling to wait politely -- and die -- while pharmaceutical companies and the Food and Drug Administration carry out the usual, glacial process of testing new medications for safety and effectiveness.

As a result of their efforts, they have won much wider access to drugs still in experimental stages. They have demanded the right to participate in studies and pioneered in developing alternative ways to test new medications. They have successfully pressured the FDA to shorten its approval process and pharmaceutical companies to lower drug prices.

Such changes have generally been benign. But they do increase the possibility that a drug with dangerous, latent effects could slip through the speeded-up process or, more likely, that time and money will be wasted on ineffective remedies.

But the danger of backlash remains real. AIDS activists are sometimes resented for defying long-established public-health policies covering sexually transmitted diseases. The elaborate precautions they have insisted on to protect their privacy, even when it can increase risks to others, are an irritant. And rather than accede to demands and risk ugly confrontations, many researchers and pharmaceutical companies may simply decide to work in other areas.

Backlash or not, as the role of government in health care grows, so will AIDS-model activism, with all its complications.

Joan Beck is a columnist for the Chicago Tribune.

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