Across the nation, as health-care advocates observe World AIDS Day December 1, they are also facing such hard realities as fewer funding dollars, growing infection rates, and increased public apathy on the domestic scene.
In Houston, state cuts in funding for HIV/AIDS medications go into effect December 1, and couldn't have happened at a worse time, said Patrick Wright, chair of the Episcopal Diocese of Texas' Commission on AIDS Ministries.
In Southern California's Orange County, the non-sectarian AIDS Service Foundation (ASF) experienced a $686,000 cut in federal funds from its 2004 budget and expects additional cuts next year. In the meantime, the agency has turned for help to local churches and other funding sources. But current needs far exceed contributions and grants, said Canon Jack Plimpton, director of the Bishop's Commission on AIDS Ministry in the six-county Diocese of Los Angeles.
And in New York City, the Rev. Rand Frew, who on November 30 held an annual St. Nicholas Day commemoration to gather gifts for 2,000 AIDS-affected and infected people, said federal dollars aren't the only funds dwindling: donations are scarce all over, including among church organizations and private sources.
Frew, whose agency, AIDS Action International (AAI), has a modest annual budget of $46,000 and a mostly volunteer staff and which serves New York, Florida, Nevada and the Philippines, echoed a common theme: public apathy as one of the most difficult challenges to AIDS ministry.
"People are surprised when I tell them I'm still working in HIV," said Frew, who served the Episcopal Church as national AIDS staff officer from 1988-1994, and who began working in AIDS ministry in 1981. "Some say, 'I thought that was taken care of by now.'"
One of the hurdles advocates face is the funding issue. "It's important to note that funding for international and domestic HIV/AIDS programs is considered separately by Congress, noted Maureen Shea, director of the Episcopal Church's Office of Government Relations in Washington. "We believe there needs to be maximum funding for both.
"Although President Bush has not made the same commitments to HIV/AIDS funding domestically that he has internationally, the fact is that the Administration has under-funded AIDS programs in both arenas," she said.
Rate of new infections rising
But AIDS infections are on the rise, particularly among women and people of color-a theme for 2004 observances of World AIDS Day, now in its 17th year.
The Kaiser Family Foundation estimates that nearly 1 million people in the United States are living with HIV/AIDS and about 500,000 have died from the disease. A significant proportion of them are not receiving regular HIV care, including medications for HIV, and an estimated one in four people with HIV do not know they are infected.
People of color, young people, women, and men who have sex with men have been particularly hard hit. African Americans, for example, represent a growing proportion of new HIV infections and AIDS diagnoses, accounting for half of AIDS cases diagnosed in 2002. Women also represent an increasing proportion of AIDS diagnoses, accounting for about one quarter of new diagnoses in 2002.
In 2003, African Americans accounted for at least 25 percent of all AIDS cases, compared with 20 percent in 2001. That proportion could be higher, since estimates are based on data collected in just 29 states. Although African Americans represent just 12 percent of the country's population, they experienced more than half of new HIV diagnoses in recent years, according to the Center for Disease Control and Prevention in Atlanta.
Especially affected are African American women, who account for up to 72 percent of new HIV diagnoses in all U.S. women. At the turn of the 21st century, AIDS ranked among the top three causes of death for African American men aged 25-54 and for African American women aged 35-44 years. AIDS advocates were dismayed when, in their vice presidential debate, neither Vice President Cheney nor Sen. John Edwards was aware of the shocking statistics on AIDS among African-American women.
Experts believe that poverty and other forms of socioeconomic deprivation increase vulnerability to HIV infection. It is estimated that one in four African Americans lives in poverty.
Globally, an estimated 39.4 million people are living with HIV/AIDS. Of those, 2.2 million are children under 15 years of age. There were 4.9 million people infected with HIV in 2004. Another 3.1 million have died of the disease this year.
The AIDS epidemic is affecting women and girls in increasing numbers, particularly in Eastern Europe, Asian and Latin America. About one-half of all people living with HIV worldwide are female. Sub-Saharan Africa, home to 27 million Anglicans, is among the areas most affected by AIDS, with 25.4 million people currently living with the disease, and 2.3 million reported deaths so far this year. Episcopal Relief and Development's HIV/AIDS programs empower women and young people affected by the disease in central and southern Africa so they can support themselves and their children.
Churches respond amid cuts
Federal dollars are tightening for domestic care, say activists like Ty Rose, director of annual giving for the AIDS Service Foundation (ASF) of Orange County, California.
ASF wasn't the only agency that lost money-in March of this year, the Bush administration cut San Francisco's federal AIDS budget by $4 million, a 12 percent decrease and among the largest in the nation. Oakland and San Jose also received cuts from funds doled out from the Ryan White CARE budget, as did Newark and other cities. This year's Ryan White Act budget totaled $595 million, a $5 million decrease from last year. Allocations are based on the number of HIV and AIDS cases and applications submitted by cities competing for the money.
In Southern California, the ASF also got churches involved, but with food drives. After ASF's federal funding was cut, the agency called on local churches like St. George's Episcopal Church in Laguna Hills and St. Clement's Episcopal Church in San Clemente, to help out with food for their nutritional program.
"We lost $274,000 in nutritional services from our pantry that provides food to people living with HIV and AIDS," said Rose, whose agency offers nutritional services, home health care, mental health counseling, case management, transportation, and prevention services.
ASF downsized from 1,000 clients to 600 and was considering cutting back from two bags of groceries per client per month to one.
"About 30 percent said this was the only source of nutrition they had," Rose said. "We gave them two bags of groceries a month that equaled about $50 total. We made an appeal and faith communities stepped in to help bridge the gap so we were able to reinstitute the two pantry orders per month."
Rose said the agency anticipates additional cuts in its Ryan White Act funding next year, the source of most federal AIDS dollars. The outlook is chilling, because the agency continues to see an increase in infections, particularly among youth, adults over 50 and Latinas. More devastating, is the lack of awareness about the disease, he said.
"AIDS used to be on the front page of the newspaper, now it's buried somewhere in section B under the big-screen TV ads," Rose said. "There are a large number of people who assume that there's medication so there's a cure or you can live with it. There's a general apathy."
National security issue, especially for youth
Mark Thompson, 52, a volunteer counselor with the AIDS Service Center in Pasadena, California, for more than two years, says the disease is real enough - a fact that young people must be helped to understand. His brother Kirk died in his arms from it and Thompson has also been living with HIV for more than two decades. The AIDS Service Center he serves was founded in 1987 by Pasadena's All Saints' Episcopal Church.
"People continue to sicken and die from AIDS. They don't have proper access to medications, which are extremely expensive, plus there's a general fatigue with the issue that translates into there's less money to be found from private quarters," he said. "A lot of AIDS funding in the country is administered through Ryan White Act and the Senate keeps renewing it without any huge increases."
Thompson said he takes 18 pills a day, struggles with such side effects as diarrhea, vomiting and neuropathy, and has experienced "some very gnarly moments."
"AIDS has many different faces," he said. "At the clinic where I work, I see a lot of single Latino women with children with AIDS from husbands who were out playing around, often with other men. We're seeing a rise of HIV infection tied to the crystal methamphetamine epidemic. Anytime there's drug use, safe sex practices go out the door. It's an absolutely deadly combination when mixed with HIV.
"I have one patient, a beautiful 21-year-old African American man, Jonathan, who has been HIV-positive his entire life. He was a premature baby and he was given tainted blood for a transfusion when he was born. And there are some gay men in their 50s who've been dealing with AIDS for as long as Jonathan, where the idea is to just keep hope and meaning in life alive because people are just tired. I've heard the expressions 'I'm a dented can, damaged goods.'"
Thompson and others, like Wright in Texas, say abstinence counseling doesn't work.
"It feels like we're going back to the Reagan years, where we just ignored the problem and thought it'd go away. Obviously, that's not going to happen. That's what got us to this point," said Wright, who considers the AIDS epidemic a national security problem.
"I talk to young people all the time," Wright said, "and they don't realize that they can get infected from tattoos, or body piercing. History has proven to us that we need to give young people the skills it takes to avoid HIV and other sexually transmitted diseases that are lifelong infections, such as chlamydia and hepatitis C."
He estimates that current statistics about AIDS-related death are underreported because people are living longer with HIV and taking more medicines that cause heart and kidney failure.
"The numbers are misleading. People with HIV/AIDS may die from heart, kidney or other problems related to the medicines and the disease, but it isn't correlated with the disease. The death is reportedly due to heart failure," he said.
"I'm afraid we're going to go back to basically ignoring the situation," he added. "We're not addressing our own problems adequately. Schoolbooks are being changed. Sex education was inadequate to begin with, and is becoming more limited, teaching strict abstinence as the only option to avoid infection. Unfortunately that's gotten us to where we're at. So many young people are affected; entire generations have been decimated.
"I've talked to people who've lost all their friends several times over. It's like they've been in combat for 20-plus years."
Pasadena's Thompson considers abstinence counseling the "let's just stick our heads in the sand" approach.
"The most important thing is to keep the conversation going, and not in the pejorative," he said.
Church must increase education
Thompson and other activists across the nation say the church absolutely must get more involved in the fight to raise public awareness, but also must address such bedrock issues as housing and
"The church often gets caught up in other things; we can see the backlash of the Gene Robinson consecration and the blessing of gay unions and it just indicates to me that there's still a lot of fear and phobia when it comes to talking about sexual matters," Thompson said. "When we can't have healthy conversations about sex, we can't really have healthy conversations about our lives. Not really.
"There are dual issues that also need to be addressed, like poverty, prostitution, substance abuse, in prevention campaigns as well. We have to help people live longer and fuller lives. Staying on the medications is not easy.
He said the church has to be ready, willing and able to deal with the God questions about "meaning, spirituality, which come up, big-time, for folks dealing with life threatening illness and to provide incentives for people to stick with the program they're on and then support their journey for meaning and hope in life. It begins to wear out after time."
The church needs to get focused on mission again, said AAI's Frew, whose agency also offers education and prevention services, as well as provides financial support and training for about 20 Filipino college students. In return, the students serve as peer HIV/AIDS educators, said Frew, former rector of Holy Apostles and founder of the Chelsea, New York congregation's soup kitchen. He now assists at the Cathedral of St. John the Divine.
"I'm surprised, too, at the extent of the obstructionism of some Christian churches to good HIV/AIDS education. It's a scandal," he said. "They won't allow discussion of safer sexual practices among youth, even among young men and women, but focus on abstinence-only, which is absurd. All it takes to get infected is one time."
The Episcopal Church must continue to speak out on this issue, Frew said, noting that some quarters of the denomination are "too quiet" on the subject. "We have a responsibility; people in this country have learned a lot about disease. We've had terrific activists on the front lines for years and the information needs to be put out there over and over again without a sense of shame, embarrassment, and with no apologies."
Meanwhile, the ASF's Rose said that the agency, which turns 20 next year, plans to reassess its ministry in light of changing political and social realities.
"A lot of the funding in prevention is going to abstinence-only education, and so for those of us who don't teach abstinence as the only form of prevention, there's a loss of funding," he said.
"We're going to rethink who we are and what we're going to be in the future. Some agencies are combining with other causes, or we may become a direct service provider. We are considering other creative ways to combine resources to continue to meet the needs of people. We don't have a solution for that yet, but we are working on it."