AEGiS-BAR: Where's the community in the community planning process?

Important note: Information in this article was accurate in 1999. The state of the art may have changed since the publication date.

Where's the community in the community planning process?

The Bay Area Reporter - June 4, 1999
Michael Lauro, ACT UP/Golden Gate Writers Pool

Recently, Mayor Willie Brown announced a $2 million HIV Prevention Initiative, seeded with $1 million from DuPont Pharmaceuticals with the city of San Francisco matching that amount. The mayor stated that "the city will match DuPont Pharmaceuticals' grant in an effort to inspire other companies to follow their lead." The mayor hopes to raise another $3 million from "other companies" for a minimum of $5 million, to be spent over the next five years. At the May 4 press conference, the mayor stressed the need to target communities most at risk, including people of color, women, and young gay and bisexual men.

Whether it's $2 million or $5 million, this represents a significant pool of prevention funds to be dispersed. In 1997, by comparison, the last year for which complete information is available, the San Francisco Department of Public Health expended $9,854,934 on HIV prevention from federal, state, and local sources. Over 90 percent of this money provided an array of interventions including HIV counseling, testing, referral, education, and outreach, primarily through the network of private HIV/AIDS agencies operating throughout the city. These same agencies certainly raise additional funds to support their own prevention services, although as one DPH staffer stated, "We've been trying for years to figure out what that total dollar amount is, without much success."

Almost lost amidst the fanfare, a new HIV prevention coalition is forming "to coordinate the initiative" by way of grants to already existing HIV prevention efforts and agencies as well as developing its own "innovative programs." Currently, under the San Francisco HIV Prevention Plan, DPH doles out the money after the community-based HIV Prevention Planning Council (HPPC) sets out priorities for these resource allocations. Over 30 community-based agencies and community representatives sit on the HPPC.

Who, what, and how?

Several interesting û if not troublesome û points regarding the Brown-DuPont announcement merit closer scrutiny, however.

The first is the relationship between this new coalition and the existing HPPC. It's unclear what the precise relationship will be, if any, between HPPC and the "HIV Prevention Initiative" coalition. Early published articles stressed that the money would be "administered and awarded by a three-person committee." However, in a press release issued from the mayor's office, it states that "the initiative will be coordinated by a coalition of participating organizations (presumably AIDS organizations), members of the San Francisco Department of Public Health, and community leaders."

Indeed, some HPPC members are privately expressing concern over whether this new coalition is another of Brown's end-runs around the community planning process. They point to the well-publicized current controversy happening at HPPC's sister advisory board, the HIV Health Services Planning Council, where the mayor has tried to reign in the independence of that body more than once through a variety of means. That council prioritizes and allocates funds for AIDS/HIV services through the Ryan White CARE Act (as opposed to HIV prevention efforts). The mayor's office has gone so far as to refer to that body as "the Mayor's HIV/AIDS Planning Council," in previous years.

The time-tested community planning process embodied within the CARE Council is mandated by the federal act that created it. Unfortunately, our local HIV/AIDS prevention process is not as insulated from acts of political interference, and this new prevention initiative further corrodes that independence.

The pleasure of the mayor

The offices of Dr. Tom Coates, one of the three co-chairs of the new prevention coalition, stated that "the degree of collaboration as opposed to coordination with HPPC is still unclear" and that "the mechanism has not been decided yet."

What seems very clear at this early point is that this new coalition will work independently of the HPPC. The question of what the composition of that body will look like is just one still undecided û or at least, unannounced û issue. Given that these new members of this far less independent body will be both appointed by, and serve at the pleasure of, the mayor, any appropriate mechanism must insure that the independent voices of the PWA/HIV community as represented in the HPPC are at the same table with the experts and the bureaucrats.

For that to happen, the mayor's office must hear from us. Phone the Mayor's Office of AIDS & HIV Policy at (415) 554-5101 and insist that the mayor genuinely engage our community in a process that is fair and inclusive.

Sustained by Sustiva

The other troublesome issue is the real cost at which this new initiative comes. Reeling from the vocal attacks by AIDS activists around the world, DuPont was sorely in need of a public relations makeover. It seems that Mayor Brown was eager to oblige and will even be calling on other pharmaceutical companies to sweeten this new prevention pot.

That the DuPont grant of $1 million comes from the profit of its overpriced AIDS drug, Sustiva, is beyond question. Sustiva sells for about $4,850 a year. Its main marketing advantages of once-daily dosing and the possibility of substituting Sustiva for protease inhibitors in anti-HIV combination therapies is not lost on its makers, DuPont Pharmaceuticals. Similar drugs in the same class (non-nucleoside reverse transcriptase inhibitors) are priced as low as $3,100 a year.

The difference means that for many PWAs in many states and in many other countries, AIDS drug assistance programs will fall far short of what's needed to keep people alive. Or more accurately, far short of the high price tag DuPont has created for its new drug.

Glen Hillson of the Canadian Treatment Advocates Council said of DuPont's pricing of Sustiva that, "AIDS drugs are already far too costly, and now the drug companies are escalating the problem."

Given that DuPont's "generous gift" is borne on the backs and the bodies of persons with AIDS around the world, the very least that our mayor can do is ensure that the community-based HPPC be brought fairly into this process. Blood money should be able to afford that.
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