AIDS TREATMENT NEWS Issue #214, January 6, 1995
John S. James

As of this writing (January 6), it is too early to know what threats to AIDS research, care, and prevention will come from the new Republican-controlled Congress. A serious but little- noticed concern is that Congress will spend the next six months debating and passing tax cuts, without telling people what programs will be cut to pay for them. Then, starting around July, programs will suddenly and hastily be cut before the new fiscal year which begins in October. Military programs, social security, and Medicare -- which are the most expensive -- will be spared because they have powerful constituencies, resulting in huge cuts elsewhere (including Medicaid, which unlike Medicare is only for persons with financial difficulties). Exactly where the cuts occur will depend on the strength of political constituencies, not on the national interest.

Under this scenario, the reauthorization of the Ryan White CARE Act -- a major priority of AIDS organizations -- could be relatively easy. But reauthorization is only one step in funding; money must also be appropriated later. We will need grassroots public support for both steps.

On AIDS prevention, another concern is that funding from the U.S. Centers for Disease Control may be put into block grants to states; then states with conservative administrations may defund AIDS prevention because it is controversial. With block grants, state bureaucrats controlled by the governor and the legislature will make the decisions, eliminating the community involvement which has developed in Federal programs.

AIDS should be bipartisan, and there is talk that Washington AIDS organizations over the years have worked mainly with a few Democrats, and not built working relationships with other Democrats, or with moderate Republicans, and their staffs. (The new Congress could be helpful in some ways, such as reducing the vast, legally-required inefficiencies in drug development, allowing small companies to participate effectively.)

Both parties should remember a nationwide survey, published by the BOSTON GLOBE on June 17, 1990, page 1, which found that one American in five personally knew someone who had AIDS or was HIV positive; the survey questioned 1,000 adults chosen to be representative of the U.S. population. As far as we know, no similar survey has been done since, so we do not have more recent data. But the percentage is probably higher by now, because there are more cases, and also because there is more openness about AIDS, so the illness is less likely to be concealed.

[Incidentally, the same poll which showed that mass organizing in AIDS is possible also showed why it is necessary --the huge "compassion gap" depending on how people were infected. About 88 percent strongly agreed that people who got AIDS from a blood transfusion should be treated with compassion. But the figure fell to about 43 percent for those who got AIDS through a homosexual act, about 42 percent if through IV drug use, and about 45 percent if through sex with a drug user.]

Of these 50 million or more people who have a personal connection with the epidemic, a relative, friend, or acquaintance whose life is at risk, probably far fewer than one percent have ever contacted their representatives in Congress, or any other public officials, to let them know of their concern. Many members of Congress -- probably most -- never hear from their constituents that AIDS is important to them. Unless this changes, we are in serious trouble.

A central reason for the silence is that AIDS organizations, with very few exceptions, have failed to ask the public (in ways that make sense to those not already heavily involved) to contact their representatives. Most AIDS "action alerts" have been written for AIDS professionals; they take many shared assumptions for granted, and do not explain the rationale of the issue to the general public. Many of the largest AIDS political organizations do not even offer individual memberships, or any other way for non-specialists to be involved.

Also, most people will not phone or write public officials alone by themselves, just on the basis of a written document; they also want to hear about the issue from other people. AIDS organizations need to support grassroots groups throughout the country, which could meet frequently and make their concerns known to their representatives.

Our representatives must hear from us no matter what their position -- even if they already seem to be committed enemies, or committed friends. They need to know their constituents care. And we will need to include political communication as a regular part of our everyday lives, not only at elections or when AIDS is in the headlines, but at all times.

The "AIDS Coffee Klatch," described in the last issue of AIDS TREATMENT NEWS, is one model for small, local groups. We had to start independently, as national AIDS organizations are not doing this work. And we had to write our own action alerts, because most of the existing ones proved unusable. Small citizens' groups should not need to do this.

The AIDS community is facing disaster if it does not do a better job of grassroots organizing. It must bring together the organizers who can do the work with those who can fund them. And it must support local groups with policy recommendations and action alerts which both activists and the public can fully endorse. And it must develop a "corporate culture" of day-in, day-out mass mobilization of support.

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