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The bad news for AIDS charities is that their private grant money is declining. The good news is that the main reason probably isn’t "compassion fatigue," or a change in attitudes towards AIDS victims. Rather it appears AIDS giving is dropping for the best of all possible reasons: The number of AIDS cases and deaths are dropping — fast.
Overall, AIDS cases in the U.S. went from about 60,000 in 1997 to about 48,000 in 1998 according to the Centers for Disease Control and Prevention in Atlanta — a 20 percent drop. That’s 42 percent lower than the 1995 peak of about 68,000.
What about subpopulations like teenagers, women, and babies? Not long ago we were reading headlines like "AIDS Runs Wild Among Teenagers" and listening to claims like that of then-Congresswoman Pat Schroeder that AIDS was "spreading unchecked" among teens and was "threatening the loss of another generation." Yet for 1998, teenagers comprised merely 0.6 percent of all cases. That’s the same percentage as the year before, but again since the total number of AIDS cases declined, so did teen cases. Of teenagers diagnosed in 1998, only 68 were in the heterosexual contact category — fewer than died of pneumonia and flu.
AIDS cases among women were supposed to soon overtake those of men. Indeed, they did comprise 23 percent of all cases reported in 1998, a "jump" from 22 percent the year before. But in sheer numbers, women’s cases fell from over 13,000 to less than 11,000.
With fewer women getting AIDS, you’d guess fewer babies are, too. And you’d be right. Infant AIDS cases fell from 671 in 1996 to 473 in 1997 to 341 in 1998. While USA Today predicted in 1988 that, "By 1991, one in ten babies may be AIDS victims," at its worst it was about one in 5,000.
As for heterosexual transmission, cases among those who claimed they got the virus in this manner remained fixed at 14 percent of the total for 1998. But since all cases fell by about a fifth, heterosexual cases did as well.
Overall AIDS-related deaths, meanwhile, plummeted from about 50,000 in both 1994 and 1995 to less than 20,000 in 1998. Then, AIDS was the eighth greatest killer of Americans; now it no longer makes the top 15 list.
AND FALLING CONTRIBUTIONS
A 1999 Gallup Organization survey of 276 foundations and corporate givers found that the number of donors making AIDS or HIV grants fell by 21 percent since 1997, according to the group that commissioned the survey, Funders Concerned About AIDS. The New York-based FCAA is a coalition of about 1,500 grantmaking institutions. During the same period, the number of grants of $50,000 or more declined by 22 percent, the survey said — even as the booming stock market led to record increases in foundation giving, including health-related grants.
Some of the lost AIDS funding was offset by a 17 percent increase in federal AIDS support, from $4.7 to $5.5 billion. But those receiving these new funds may not have been the charities whose funds were cut. Thus while some continue to do handsomely, others are stretched. Still others have disappeared.
The Gay Men’s Health Crisis in New York has cut about a quarter of its staff positions, reducing its budget by one fifth. Two major AIDS local service organizations, Project Open Hand and Shanti, combined office space in late 1998 to save costs. Shanti Executive Director Bob Rybicki said they also had to freeze salaries. Meanwhile, the AIDS Action Committee of Massachusetts is facing a $1 million shortfall.
Yet they could consider themselves fortunate. In 1998, the San Francisco-based National Task Force for AIDS Prevention, which worked to prevent transmission of the disease, went out of business. So did the Ryan White Foundation, named after the young hemophiliac who died in 1990.
To provide a closer look at what was going on from the giving end, the FCAA put out a report last April called Philanthropy and AIDS: Assessing the Past, Shaping the Future. The report was based on a survey of giving by corporations and foundations.
The FCAA found that the pool of charities investing in HIV/AIDS is shrinking. Only 53 percent said they awarded at least one HIV/AIDS grant in 1998, down from 59 percent the previous year. "More troubling is that only 46 percent indicated that they intended to make HIV/AIDS related grants" last year — a decline of about a fifth over just three years.
Most worrisome to the FCAA is the drop in the number of the funders that have given large sums. "For any issue, as long as new funders are coming along to replace old ones, you could say it’s part of the natural ebb and flow," Paul Di Donato, the coalition’s executive director, told one newspaper. "But if the stalwarts are moving away and not being replaced, then you have a crisis on your hands."
Among the reasons donors said donations were dropping:
The report further suggested the decline might be attributed to other causes, such as the possibility that donors are experiencing "compassion fatigue" after nearly two decades of financing efforts to stop the disease.
"The epidemic is old news," Jane Breyer, development director for the San Francisco AIDS Foundation claims. "It’s getting harder and harder to get people engaged. Folks are burned out."
A lack of demonstrable success against muscular dystrophy has done nothing to stop ever-increasing contributions to the MDAA Telethons.
Possibly, but compassion fatigue hasn’t proved fatal to Jerry Lewis’s campaign against muscular dystrophy, now in its 35th year. Last September, despite the modest medical progress that has been made against muscular dystrophy, and despite its host’s own health problems, the Labor Day Telethon raised more money than ever.
Another theory, enunciated by Daniel Zingale, executive director of AIDS Action of Washington, D.C., is that donors are overestimating the significance of new drug therapies. "One of the most serious contributing factors is the medical breakthroughs. They’ve been misunderstood to be a cure. "
Yet this theory is unconvincing as well, since few foundation program officers or donors to AIDS groups are so unsophisticated as to labor under the illusion that AIDS has been "cured." They do know that tremendous strides have been made, not just in fewer cases and deaths but improved quality of life for those living with the disease.
Naturally, though, many grant recipients would like the best of all worlds: an improving AIDS situation with stable or even increased funding. In this, they have powerful allies in both the public health bureaucracy and the media. False, alarming AIDS propaganda may also be on the decline, but it’s still going strong.
Some of the proaganda is of the type we’ve been seeing since the mid-1980s, grossly exaggerating the risks to heterosexual men and women, and children, while downplaying the unfortunate reality that AIDS really does discriminate against specific groups, namely male homosexuals and intravenous drug users.
Take, for instance, the claim that in rural areas, AIDS is "rising at a rate higher than in urban areas because the message takes longer to get into the rural areas," as the Fort Worth-Star-Telegram reported Blaine Parrish saying in June, 1998. Parrish is executive director of AIDS Resources of Rural Texas. "It’s a massive denial of a problem in the rural areas because we believe it’s only gay white men and IV drug users that get AIDS, but the greatest rise is among heterosexual teenagers 13 to 19."
Actually, data from the Centers for Disease Control and Prevention (CDC) show that AIDS never caught on in rural areas and is shrinking there even faster than in the rest of the country. And it’s truly hard to comprehend how a drop in heterosexual teen cases can represent "the greatest rise."
According to USA Today, Kate Shindle, Miss America 1998 and a self-described AIDS crusader, "notes that two American teens contract HIV each hour and generally demonstrates her mastery of AIDS statistics and jargon." Shindle gave the same "two American teens per hour" figure during a CNN interview. Asked if that was a national figure or applied to the world pandemic, she replied that she wasn’t sure, but then immediately added, "the statistic that I heard is two American teenagers every hour ages 13 to 21." Teenagers ages 13 to 21?
In a September 1999 article entitled "What every health care professional should know about AIDS," Health Care Manager reported on the "dynamic growth in reported AIDS cases of heterosexual transmission." Its source? An obscure publication dated 1992. Also last September, AIDS "Czar" Sandra Thurman declared, "We’re at the beginning of an epidemic, not the end of an epidemic, with no vaccine, no cure." There are few diseases for which we have vaccines, and many for which there is no cure, but this has little to do with whether they are epidemic or not.
Another popular theme is the alleged upsurge in infections and international AIDS cases.
"Infection rates are rising, especially among young people," says one Colorado AIDS activist. "Rates of infection continue to rise for women," says a staffer with Gay Men’s Health Crisis in New York City. Kate Shindle says the rate of infection among those of college-age is "terrifying and dangerous." More importantly, the New York Times informed us last August, "The rate of infection with the AIDS virus in the United States is no longer declining," according to a CDC study.
In reality, nobody knows what the rate of infection is for the nation as a whole, much less for subgroups such as women or people of college age. The CDC has used an estimate of 40,000 for several years now, though it has never explained the methodology behind that figure. But here’s what we do know. Rates of almost every type of sexually transmitted disease, including syphilis, gonorrhea, chancroid, and genital warts are all declining. Why would HIV infection be going up while these are going down, especially since many STDs facilitate transmission of HIV? To the extent they’re declining, they’re not just a surrogate for a decline in HIV infections, they’re actually helping to contribute to the drop.
The continued drop in AIDS cases also hardly lends itself to the thesis that infections are going up.
Finally, the evidence upon which the New York Times based its story was all from a single study of just six major urban areas with large gay populations. It found that while infections increased by 8 percent among gay and bisexual men tested at sexually-transmitted disease clinics (where naturally one would expect the highest rates), the increase was just 0.48 percent at these clinics among self-described heterosexuals.
What of all the talk about the growing world pandemic?
In the U.S., diarrhea is something of a joke but it’s a major cause of death in Third World countries plagued by diseases such as dysentary and cholera.
Here too, we’ve seen a conscious shift from hard data to soft, from cases to estimates. Time and again donors are told of "cases" in the world or the Third World or a specific country like Thailand in such specific terms that one would think the victims had walked through a turnstile with a counter. Yet these are all estimates, and the estimates are from organizations that are given more funds if they declare there’s more AIDS, which doesn’t inspire confidence in the figures.
Even individual Third World countries that once claimed to have no AIDS cases at all, lest it kill the tourist trade, are now labeling practically every swing of the grim reaper as AIDS-related because American donors for the most part just aren’t very interested in more curable killers like tuberculosis, malaria, and diarrhea. AIDS makes the front pages; talk of diarrhea, lethal or no, elicits snickers.
"We should not mistake the progress to date for true success," declares Philanthropy and AIDS. True success, it says, is "an eradication of HIV/AIDS." Yet the sad truth is that the only disease ever eradicated is smallpox, for which the first vaccine was developed two centuries ago. Even smallpox was wiped out only after a 13-year effort with a highly effective vaccine working against a disease that had already disappeared from most of the world.
Setting such a goal for HIV/AIDS is like making the next goal of our space program be to send men to another solar system when we haven’t yet made it to the nearest planet. And while the rhetoric is obviously intended to protect budgets, it could just as easily backfire and replace alleged compassion fatigue with a real sense of utter hopelessness.
A more realistic course of action would consist of being, well, more realistic.
For donors, this means spending the money where it needs to go. Granted, the international AIDS problem is growing, but the domestic one is not. This would seem to indicate that donors concerned about AIDS might start looking abroad, rather than engaging in the non-sequitur of funding an American group at previous levels because AIDS in China is on the rise.
Many AIDS activists will say and do anything to be able to keep dipping into the honey jar.
Second, a recent issue of the newsletter AIDS Weekly Plus complained that, "After nearly 20 years of living with the AIDS epidemic, there are signs people no longer treat it as a health emergency. " But that’s exactly how they should be treating it. It’s hard to justify labeling something that’s been going on for almost two decades an emergency unless it’s taken a sudden turn for the worse. Yet AIDS has taken a sharp turn for the better.
Finally, don’t let the "squeaky wheel" syndrome dictate your funding for AIDS or any other disease. A needy cause shouldn’t suffer because its PR efforts aren’t as slick as that of another cause.
President Clinton said recently that hate crimes are "the biggest problem the world faces," making specific reference to homosexuality. If so, you couldn’t tell it from the way our nation has opened its hearts and pocketbooks to victims of AIDS. But we need to worry about going too far in the opposite direction as well. That includes denying how much the AIDS situation has improved from those horrible dark days of the early 1980s.
Last February, the Chicago House Hospice, one of the last hospices in the nation to care exclusively for AIDS patients, closed its doors. The closing was not due to a lack of contributions, but to a lack of patients. Sometimes it’s nice to go out of business.