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Health and unequal opportunity: the battle for federal dollars.

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 advocates constitute a case study in narrow-focused political decision-making that favors a particular illness over others that may claim more lives every day. It strongly reinforces the tenet that a well-organized minority affected by one disease wins handily in protecting its interests over those of the diffuse majority affected by most other illnesses. Moreover, when it comes to dividing the spoils of funds and resources in the political arena, rational arguments, scientific priorities, and equity considerations are pushed aside not only to solve the "problem of the day," but to appease narrow-interest advocates who know how to manipulate, threaten, and persuade.

One of the major reasons for the success of AIDS activists is that the epidemic initially involved mostly gay men, a group of people already politically well organized. By the time the initial cases of AIDS were diagnosed in 1981, gay men, together with lesbians, were becoming a growing force in American society, were mentally and tactically ready to challenge the system, and were looking for ways to demonstrate their strength. They were inclined to suspect and mistrust the health and scientific establishment, and already had set up health clinics in major cities.

After the AIDS activist movement came together in 1987, its pressure on scientific researchers, public health officials, and pharmaceutical manufacturers led to significant changes in health care policies and such practices as speeding up the drug approval process, expanding access to drugs during the investigational and pre-licensing stage, and establishing a parallel track system to ensure greater access to experimental therapies for HIV-infected individuals ineligible for clinical trials and with no reasonable treatment alternatives. The parallel track is the most significant victory because it fundamentally challenges the tenets of the scientific community about how research should be conducted and access to drugs regulated.

Analogously, arm-twisting by gay activists persuaded Burroughs Wellcome to decrease the cost of its anti-retroviral drug zidovudine (AZT). That gay advocates were able to accomplish on their own what Pres. Clinton is trying to do for children's vaccine by using the prestige and weight of his office is quite remarkable. Lastly, gay activists can claim at least partial credit for pressing Congress to allocate a large amount of funds-$1,300,000,000 for Fiscal Year 1992 - for Public Health Service spending on HIV research. The general public and scientific community were not represented well, if at all, in this process.

The fact that the AIDS advocates have achieved unusual success in molding health policy at the national level has led many to question whether or not the disease is receiving more than its fair share of funds and is being addressed in a manner that may be counter to the best interests of public health. In a Time magazine essay entitled AIDS: Getting More Than Its Share?" (June 25, 1990), journalist Charles Krauthammer called it "the most privileged disease in America.... AIDS [has received] more research funding, more treatment money and looser drug-testing restrictions than any comparable disease."

Others have begun to denounce the amount of funding for AIDS as too abundant compared to the financial support provided for other serious illnesses. Research related to AIDS absorbs about 10% of the budget of the National Institutes of Health - $858,000,000 out of a $9,200,000,000 outlay for 1993. Spending by the Public Health Service, to which NIH belongs, was $1,262,000,000 for research on AIDS in 1992, compared to $1,878,000,000 for cancer. Critics, however, point out that cancer kills 12 times as many people annually as AIDS. While AIDS deaths in 1993 are estimated at 47,000, cancer fatalities will be 526,000. Yet, in recent years, Federal spending on AIDS has surpassed or been equal to that for cancer.

In 1992, research on heart disease received 726,000,000, 57% of the amount allocated for AIDS. Critics see this difference as grossly disproportionate, as AIDS has killed 171,890 Americans since 1981, while heart disease results in that many fatalities every four months. Similarly, diabetes, which affects an estimated 14,000,000 Americans, received $282,000,000, 22% of the sum that was destined for AIDS.

Since the total amount of funds allocated for health care research has remained basically the same during the last few years, it is clear that, in a zero-sum world, money spent on AIDS is not available tores be expended on other diseases. Additionally, AIDS research is very focused, the opposite of traditionally broad basic research, and thus offers fewer chances of spin-off breakthroughs that are useful for other diseases. Thus, the final payoff is smaller or nil for other illnesses.

Politicizing the process

The accomplishments of AIDS advocates have shown that decisions on the apportionment of resources for health care basically are political and consequently susceptible to well-organized lobbying and the ensuing distortions. Every disease may have its lobby, but the AIDS groups have been particularly successful because early on they quickly understood a key element of research in America - that it is a political process.

By making use of well-placed Washington connections, media know-how, street theater, and civil disobedience, the AIDS movement has been characterized as the most effective disease lobby in the history of medicine. Its most recent success was Pres. Clinton's decision to ask Congress to add $120,000,000 to the amounts for 1994 grants under the AIDS Resources Emergency Act of 1990, also known as the Ryan White Act. The titling of the bill in itself represents a masterful utilization by gay activists of the name of an innocent child victim of AIDS and of subsequent discrimination.

The President also is proposing additional funding of almost $1,000,000,000 over the next four years. His high-profile support for gay rights and issues, interpreted widely as a payback for election support and, at least by gays, as a sign of their solid power within the Democratic Party, very well could fuel the perception that health care allocations are not fair, but, rather, based on political clout.

The success and affluence of the AIDS advocates have not been overlooked by those working on behalf of patients with other illnesses. The president of the American Society of Clinical Oncology, Robert Young, was quoted in the Journal of the National Cancer Institute in 1990 as lamenting: "Why is it that we have such an effective AIDS lobby and we have such a relatively quiet cancer lobby in this country, despite the fact that we are going to lose 500,000 people this year from cancer deaths?" His comments underline the fact that, contrary to a popular saying, strength is not necessarily found in numbers.

The major difference between the AIDS and cancer lobbies is that the gay movement, which pre-dated the AIDS crisis, already had built a well-tested organizational infrastructure to take on the fight for the allocation of maximum resources to research and cures. The gays who became involved in AIDS advocacy were a relatively small and close-knit group with considerable experience in setting a political agenda, operating within the political arena, and scoring successes. Clearly, it worked to their advantage that they did not represent the entire HIV-infected constituency, excluding, for instance, prostitutes and intravenous drug users.

Meanwhile, those with cancer do not have a prior political agenda, a feeling of group unity and belonging, and can not universally claim stigma and discrimination. Also, they have not had a reason to cooperate, build an organization, and acquire political skills on other deeply felt personal issues, as gays had to, before the onset of the disease.

There are other cases of a specific group of patients influencing health care policies in bigger ways than their numbers at first would justify. An example is the establishment of a Federal obligation to provide treatment for end-stage renal disease through dialysis. The Social Security Amendments of 1972 signed into law by Pres. Richard Nixon authorized Medicare entitlements for individuals with chronic renal failure who were insured under Social Security and for their spouses and dependents. Advocacy groups composed of patients, their families, physicians, medical suppliers, and the National Kidney Foundation spared no effort to convince Federal and state governments to cover financially the treatment of those who could not afford it. The cost estimates they provided, it was realized later, were too low. Equitable access to medical treatment was used as the moral foundation justifying their demands. In 1989, Medicare (Federal only) paid $4,290,000,000, or an estimated $30,900 per capita per year, for the treatment of chronic kidney failure. That year, there were some 202,000 patients in the US., 190,000 covered under Medicare, including those with a functioning transplant.

The dynamics of the enactment of Medicare coverage for individuals with chronic kidney failure were very similar to the AIDS situation. Was fairness violated by accommodating those with kidney disease over others with demonstrably similar claims? Was fiscal prudence disregarded under political pressure by adopting a costly program benefiting relatively few people? Looking back, it appears that way.

The dialysis program can be considered a landmark case representing an unwise fiscal policy and a disease-specific solution that is unsuited for taxpayer-supported financing of health care because it is inequitable to those struck by other illnesses. Will this also be the case for HIV/AIDS-related Federal funding? There are those who argue that it is so.

Currently, a group fired up with activism is emerging from the otherwise relatively calm cancer lobby - women with breast cancer. Factors spurring them into action include the high incidence of the disease, which affects one out of every 10 American females; the "coming of age" of the politically mighty baby boom generation that now even occupies the White House; the more general drive pushing American scientific officialdom to allocate more resources to women's medical problems; and the groundwork performed in years past by the feminist movement, which consistently pressed women to take charge of medical decisions impacting them.

All these reasons working in synergy have spawned the founding of several organizations that have learned from and adopted many of the demands and techniques of the AIDS activists: more funds for research, accelerated approval of new drugs, and increased insurance coverage for mammographies and experimental cures. Significantly, a major justification for their demands is the difference between Federal fund allocations for AIDS and breast cancer. In 1993, the estimated Federal expenditure for breast cancer is $196,600,000-one-tenth of AIDS-related spending. Yet, the estimated number of women who will die of breast cancer in 1993 is 43,600, slightly less than the projected 47,000 "floor" total of deaths for AIDS.

The growing number of disease-specific activist groups includes the powerful lobby for those stricken with Alzheimer's disease. Similarly to AIDS and breast cancer advocacy, its formation was expedited by the realization of the elderly that they constitute a group with specific interests to be protected; their sense of power and effectiveness newly acquired in the wake of other successful lobbying battles; and their general support for research in gerontology. Additional triggering factors were a considerable increase in biomedical research on the illness, its exhausting and devastating impact on family caretakers, and the overpowering impotence, confusion, and frustration felt by those affected by the disease and their families. Alzheimer's activists have coalesced particularly around the battle for the approval of a promising drug, tacrine. Ageism may be a factor in the Food and Drug Administration's refusal to expedite tacrine's approval as it did for AIDS drugs.

American society definitely is partial to youthfulness. The wisdom and experience of the aged are quite low on the nation's values scale, compared to the vigor and beauty of the young. AIDS by and large is an illness striking the young and also the famous and talented. No other disease in history has claimed so many well-known victims from the glamorous worlds of acting, fashion, sports, writing, and dance.

There are other groups that advocate the needs and interests of particular constituencies in the health care rield. The major battles fought over making RU-486 available in the US. and allowing human fetal tissue transplantation research are recent examples. Other conflicts over priority access to health care are in the offing.

Pres. Clinton's proposed allocation of $300,000,000 to help states immunize an additional 1,000,000 children a year, almost doubling the $342,000,000 currently spent annually, might be theopening salvo in a major shift of resources to children's health that may characterize his years as "the era of the child." Joycelyn Elders, one of Clinton's candidates for Surgeon General, helped fuel this expectation of a confrontation over resources when she stated: "We spend $14 on the elderly for every $1 on children.... Some 70 to 90% of our health care dollar is spent on the last few months of life... It is not that we don't have the money. It's that we choose not to spend it on the children."

Hillary Clinton's well-known concern and sympathy for these issues may provide the crucial support needed in the long haul and could mute opposition for some time. In a finite world of resources, against the backdrop of raising taxes and budget cuts, such initiatives will be controversial. They add yet another competing dimension to the burgeoning field of special interest health care politics.

Impacting policy

What is the potential impact of all these groups on the formulation and implementation of U.S. health policy? Optimistically, there could be a positive outcome favorable to all consumers. For instance, AIDS, breast cancer, and Alzheimer's activists conceivably could join forces and cooperate to revolutionize various aspects of the health care system. These might include making health care more easily available to all Americans; streamlining and accelerating the cumbersome Food and Drug Administration drug approval procedures for new medicines; supporting the introduction of innovative practices; overriding the objections of established interest groups that Profit from the status quo; and battling ageism, sexism, homophobia, or racism that can translate into little research, poor services, and even lethal outcomes for unpopular or overlooked groups.

It also is quite possible that advocacy organizations focused on specific diseases may end up battling each other to place their interests and plans ahead of the others and ensure for themselves the lion's share of funding. In this world of shrinking resources, such competition would lead to divisive factionalism, bruising battles, and acrimonious disputes. This, in turn, would make it very difficult, if not impossible, to develop a coherent and fair health care policy based on a broad alliance of concerned parties and supported by a public confident in its basic fairness. These aggressive quarrels readily could spread to the scientific community, making it more difficult to carry out multi-disciplinary and collaborative research.

For this reason, the proposal being considered in Congress to create a "czar" heading a mighty Office of AIDS Research could precipitate major hostilities among disease lobbies and spur other groups into demanding the same. Establishing it could lead to substantial fragmentation, recriminations, and divisiveness by signaling that the other illnesses belong to a second tier of relevance and importance with limited or no access to the White House and thus receive less funds. Similarly, the Democrats' strategy, that some read in Clinton's class warfare rhetoric, to recapture control of American politics with blatant appeals to class jealousies and resentments could incite and fuel health care wars.

As a nation, the US. is at an important juncture that challenges its people to re-examine their values and assumptions about individual choice, reciprocal obligations, and the utilization of scarce resources. The emphasis on these rights that has been the hallmark of American culture, jurisprudence, and politics also can lead to selfishness, waste, and inequity.

It is essential that Americans acknowledge, and strengthen the many strands that weave them into a community, providing support, stability, and purposes that transcend themselves. It is vital to establish priorities through a rigorously fair process untainted by the influence of those who might claim privileged status because they are more numerous, better organized, more aggressive, or well connected.

Specific advocacy groups have a role to play in this difficult dialogue as they represent the pain, fears, and needs of the ill and their families. Their potential for disrupting the process and seeking increased benefits for their constituencies at the expense of the community is very high. It must be monitored carefully and kept in check if the US. wants to build a health care system that people can believe in and support because they perceive it as being basically fair, compassionate, and valuable.
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Article Details
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Author:Viano, Emilio
Publication:USA Today (Magazine)
Date:Jul 1, 1993
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