Along with the new name, a string of new AIDS-related aphorisms were introduced: "Lifelong Battle... Lifelong Support... Lifelong Commitment... Lifelong Friend." But Terry Stone, the outgoing head of NWAF, is quoted in the press pack as saying, "I'm ready to move on to new things." Stone is leaving AIDS work. Apparently "lifelong commitment" to the cause is something AIDS organizations demand from donors, not executive directors. Equally telling were the comments from LAA's new executive director, CSB's Chuck Keuhn. "Instead of helping people die with dignity," Keuhn is quoted, "[AIDS organizations] are helping more people to live with, and manage, AIDS as a chronic illness."
That's significant. Five years after drugs that saved the lives of people with HIV/ AIDS became available, our local AIDS establishment is finally admitting that people with access to these drugs--which includes all of LAA's clients--no longer have a terminal illness. But it appears that telling the truth isn't something Keuhn is entirely comfortable with, and he quickly reverts to form.
"The new drug therapies do work for some people," Keuhn said, "but not for everyone, and for others they have horrendous and debilitating side effects."
The new drug therapies don't just work for "some people," they work for most people. In 1995, just before the new drugs became available, 451 people with AIDS died in King County. In 1996, the number of AIDS deaths in King County dropped to 285. In 1997, there were only 88 deaths; in 1999, 51 AIDS deaths. Last year, 56 people with AIDS died in King County.
"We would seem to be stabilizing at around 50 to 60 deaths per year," says Sharon Hopkins, an epidemiologist with Public Health--Seattle & King County. "Two years don't make a trend, but it does appear that deaths are stabilizing."
This remarkable decline in AIDS deaths has taken place at the same time that local and national HIV-infection rates have been rising. If AIDS drugs only worked for "some people," we should be seeing increased numbers of AIDS deaths, not a stabilization.
As for side effects, writer Andrew Sullivan admits they "obviously suck." But the prolific Sullivan, who has AIDS, doesn't appear to be slowed down by his daily drug regimen. "The notion that [the drugs] are worse than the disease is asinine. There are hundreds of thousands of dead guys who'd be quite happy to have a dose of nausea in 2001."
Many AIDS groups have spent the last five years misrepresenting the drugs that have saved the lives of their clients--drugs that, in many cases, liberated their clients from the services AIDS organizations provide. They hoped that convincing donors that life-saving AIDS drugs didn't work would keep the money pouring in. But too few people were dying here for NWAF or CSB to make that case very effectively, and every news story of drug failure or the emergence of resistant strains of HIV over the last five years has been matched by a news story of another treatment breakthrough, yet another chink discovered in the armor of the AIDS virus.
Misrepresenting the effectiveness of AIDS drugs hasn't helped. To take a single example, NWAF took in $1.4 million on the day of the AIDS Walk in 1995; last year it took in just $700,000. Thanks to the merger, the money raised at LAA's upcoming AIDS Walk will go further, which is news that might encourage some former walkers to return to the event.
Ironically, Chuck Keuhn dismissed the merger concept three years ago in CSB's monthly newsletter, Taking Stock. Merging with NWAF, Keuhn fumed at the time, was a dangerous idea, a move that would imperil services to people living with AIDS. Keuhn was responding to an op-ed article I wrote for the Seattle Post-Intelligencer on February 3, 1998. I pointed out that the two groups wasted hundreds of thousands of dollars every year on duplicate case-management systems, administrative overhead, and office facilities. With the drop in AIDS deaths making fundraising more difficult, I wrote, it was in the best interests of people living with AIDS in King County for the two groups to set aside their institutional egos and merge.
Less than two years later, with donations to the groups falling, NWAF and CSB announced their merger. In prepared comments handed out last week, Keuhn observed that "the benefit of more streamlined administration within Lifelong AIDS Alliance will result in increased efficiencies in the money we spend." My point exactly, Chuck.
Now that NWAF and CSB have done the right thing and merged, perhaps LAA's executive director will do the right thing and stop misrepresenting the effectiveness of AIDS drugs.
