AIDS on the Home Front

Domestic nonprofit groups face increased demand, lean budgets

Earl Pike, executive director of the AIDS Taskforce of Greater Cleveland, was reviewing a grant proposal when he was

struck with a revelation.

“We said that we wanted to promote the independence of people living with HIV/AIDS,” he recalls. “And I asked myself, do we really do that? Or are we still operating from a model that AIDS is about getting sick and dying? What if we changed the goal of our services? What if we changed it to, our goal is to help people with HIV to achieve the American dream in any way that’s personally meaningful?”

Soon after Mr. Pike’s epiphany, the staff of the AIDS Taskforce held a strategic-planning meeting. It thought about ways it could help its clients find jobs, get mortgages, and run small businesses. “We absolutely have to think of people with AIDS as sick people — but not just only that,” says Mr. Pike.

Now, three years after that meeting, the group — like many other AIDS charities across the country — still wants to refocus its services. But in Cleveland and elsewhere such efforts have been stymied by a lack of financial support. Government and private donors have cut back funds, in part to help deal with the AIDS crisis abroad, making it hard to attract money to expand.

Tough Choices

Charity leaders say the money crunch has forced them to make hard choices about whether to focus mainly on serving people with the disease, many of whom can now expect to live for decades with the help of expensive drug regimes, or on slowing the spread of AIDS. Some 40,000 Americans a year are infected with the disease, according to the Centers for Disease Control and Prevention.

Adding to the demands on charities: The disease is striking more minorities, and also more people who live in poverty — people who may be especially vulnerable to discrimination in housing and employment because of their illness and who often have nowhere to turn other than nonprofit services.

“There’s a perfect storm going on,” says Mr. Pike, whose group’s annual caseload grew from 718 clients five years ago to 2,300 today.

Many AIDS groups say they have been forced to keep their focus where it has always been — on the basics, on simply keeping their clients alive.

As Eloise Hicks, executive director of the Regional HIV/AIDS Consortium, in Charlotte, N.C., puts it, “The good news is, people are living longer. The bad news is, people are living longer — but I wouldn’t go back to the other way for anything.”

As a result, she says, charities like hers face a challenge: “None of us ever thought we’d be here this long, or that the problem was going to be here as long as it is.”

‘HIV Is Still Scary’

It is not just the demand for new services that challenges charities as people with AIDS live longer.

Once protease inhibitors were introduced in the mid-1990s that made patients more likely to survive longer, HIV/AIDS became, in the public perception, just another ailment, competing for funds with other domestic health charities, says Kandy S. Ferree, president of the National AIDS Fund, in Washington. AIDS, she says, is at a disadvantage, compared with breast cancer, diabetes, and other illnesses.

“HIV is still scary for some folks,” she says. “It’s not as palatable to talk about injection-drug use, to talk about topics that are part of the AIDS conversation. We’ll inevitably talk about sex and sexuality and drugs, subjects that we don’t do a real good job talking openly about in this country.”

Charities say they also have trouble getting donors to realize that even though drugs are available to help people with AIDS carry on with their lives, those medications come with a steep price tag. Combination drug therapy costs each patient up to $12,000 a year, according to the Henry J. Kaiser Family Foundation.

While approximately half of AIDS patients are on Medicare or Medicaid, 20 percent have no insurance coverage at all, according to the Kaiser fund. Patients who lack coverage sometimes receive other types of federal aid, but many states have cut back subsidies for prescription drugs because of spending cuts enacted in the wake of significant budget deficits. Some states have had to create waiting lists, or closed their prescription-drug programs to new clients.

When that happens, charities scramble to find ways to help clients pay for their medications. “It’s great we have the treatments, for those who have access to treatment,” says Ms. Ferree. “There’s a perception that everyone has access to medications, and that just isn’t the case.”

But perhaps the biggest challenge for AIDS charities is the competition with groups working on AIDS abroad.

“There’s this myth that AIDS is only over there,” says Ms. Ferree. It is an awkward situation for a domestic charity, she says, since the troubles are so great in the developing world and a philanthropic response is long overdue, but there are still people at home who need help. “The fact that HIV is becoming more manageable doesn’t end the need to invest in HIV care,” she says.

The Children Affected by AIDS Foundation, in Los Angeles, is among the many grant makers that have turned their attention abroad. It used to give money to international AIDS programs on an ad hoc basis, but now its goal is to allot 10 percent of all its giving overseas.

“The incidence of children being born with HIV in this country is dramatically down,” notes Cathy Brown, the foundation’s executive director. More than two million children globally have AIDS, with the United States accounting for 11,000 of those cases, according to the Joint United Nations Program on HIV/AIDS.

“We certainly consider our domestic support for children affected by AIDS important,” Ms. Brown says. “We’re frequently the only foundation that funds social- and recreational-type activities for children affected by AIDS. But we are looking at ways that we can help children internationally.”

Trimmer Budgets

Shifting priorities of the federal government and state governments have also put pressure on AIDS charities — and dealt severe blows to many groups.

At Metro TeenAIDS, a nonprofit group in Washington that provides adolescents with information on HIV prevention and testing, such shifts — and a resulting budget crunch — have resulted in staff layoffs and cutbacks in some programs.

This year the organization lost $250,000, or one-third of its budget, as the federal government reduced spending on AIDS-prevention, says Adam Tenner, the group’s executive director. As a result, Metro TeenAIDS let go 3 of its 12 staff members, he says, and scaled back its peer-education efforts in the schools.

The charity is now trying to raise funds from corporate donors and seeking other ways to reduce its dependence on government funds over the long term. But that has its own drawbacks, says Mr. Tenner: He expects to be competing for private donations with other AIDS charities that have also lost government funds.

North Carolina’s Regional HIV/AIDS Consortium, which currently gets 85 percent of its budget from government agencies, is also looking to private donors to help it make ends meet.

Ms. Hicks says she just learned that, due to changes in the Ryan White Comprehensive AIDS Resources Emergency Act — the main federal program specifically geared to help AIDS patients — her organization will lose $169,000, money that covered programs such as transportation and nutritional aid for the group’s clients. The loss comes, she says, as the group has seen its caseload jump 26 percent in the past year.

The financial situation means that the charity will need to make tough choices. For example, one program is aimed at people who have both HIV and drug or alcohol addiction, and has a success rate of 50 percent — which, Ms. Hicks says, is more than twice the average success rate for such programs. Federal aid covered 68 clients last year, Ms. Hicks says, but the group ended up with 91. The charity is trying to raise enough money to accommodate more people, she says, and is debating what to do if it cannot find sufficient funds.

“Do we have to cap it out and not do the program after we reach our goal?” she asks. “Do we just stop and start turning people away? And how do we do that when we have people that want to go into substance-abuse treatment, and if we keep them sober then they’re not as likely to spread their infection and more likely to remain healthy and be productive?”

To combat the notion that AIDS is no longer a public-health emergency, many charities are paying increased attention to young people, says Jerome J. Radwin, chief executive officer of Amfar, the American Foundation for AIDS Research, in New York.

The need for communicating to that population is great, he says, because many young people place too much faith in the progress that has been made in treating the disease. He says he has heard some young people say that “even if we were to become HIV positive, by the time we would show symptoms, so many years from now, science will have answered the problems.”

That is a risky belief, and one that probably contributes to the fact that one-half of all new HIV infections are estimated to be among those under the age of 25, according to the Centers for Disease Control and Prevention.

Reaching young people is an increasing challenge for AIDS charities, especially as the federal government has increased spending for instruction that focuses exclusively on abstinence.

Another challenge AIDS charities face is that their clients are likely to be poor: An estimated 46 percent of Americans with HIV who are receiving medical care have incomes of $10,000 or less, and 63 percent are unemployed, according to the Kaiser fund.

Many charities also find themselves serving more minorities, as AIDS increasingly, and disproportionately, affects those people. Blacks, for example, account for 12 percent of the population, but half of new AIDS cases, says the Centers for Disease Control and Prevention. Hispanics account for 14 percent of the population, but 20 percent of all new AIDS cases, according to the federal agency.

These trends have not escaped the notice of Kimberly Green, president of the Green Family Foundation, in Miami, which was founded by her parents, Steven J. and Dorothea Green. (Her father was head of the Samsonite Corporation, a luggage manufacturer, and also served as ambassador to Singapore, where he created a program whose goals included improved health care.)

Ms. Green says she is specifically devoting her foundation’s domestic HIV/AIDS giving to programs that focus on new immigrants and minorities, because she is concerned about their infection rates. For example, her foundation supports two programs at the University of Miami designed to serve primarily minorities: Kool Kids, which focuses on teenagers with HIV/AIDS, and Project Cradle, which focuses on pregnant women and babies with HIV.

What Lies Ahead

As HIV/AIDS charities tailor their services to a changing population, they look to the future with apprehension. Their caseloads are certain to increase. As many as one-third of Americans with HIV/AIDS are unaware of their status, and up to 59 percent of people with the virus are not getting treatment, according to the Kaiser Family Foundation.

Ms. Ferree of the National AIDS Fund believes that groups will find the money to care for these people by creating partnerships to develop new sources of funds. Charities that rely on government grants, she says, “need to be working with community organizations, and business and labor leaders for that matter, so that they are able to create funding collaboratives. Cooperation between the public and private sector, as well as challenging organizations to work together, is critical to the success of our work.”

As Mr. Pike harbors his hopes and plans for improving the future for people who live longer with HIV/AIDS, he, too, worries about what lies ahead for organizations like his.

“There are two possible scenarios for the future,” he says. “Either the feds get it together and figure out how to develop a revised system for equitable funding for care and treatment across the United States, or organizations like us will be forced to start cutting services. And the consequence is that people will die. There’s huge anxiety right now, just enormous. What’s going to happen?”