May 9, 2011
By Sharon Sheridan

Bruce Garner says his spiritual life was profoundly changed during an AIDS healing service in 1986 at Grace Cathedral in San Francisco.

"I felt the presence of God so strongly it was like I could reach out and physically touch the Holy Spirit," the Atlanta resident recalled. "As I watched people go up to the altar rail to be anointed, every one of them walked as though they had the weight of the cathedral on their shoulders."

Returning to their seats afterward, "their faces had lighted up. They were standing straight, and you could tell that they had been healed. They had not been cured, they had been healed, and that was a very important point in my life."

The service occurred during an Episcopal Church-sponsored conference, the first national AIDS-related faith gathering ever, Garner said. About 300 people involved in HIV/AIDS ministry attended.

"We cried for about three days," he said. "We found out that we were all doing the same work, but none of us had been aware that the rest of us were doing it, which was the way it was in the early days of the epidemic."

Garner, who himself has been infected with HIV for about three decades, approached the healing service with trepidation – "I didn't know what was going to happen" – but found it transformative. The experience spurred him to increased AIDS ministry in his diocese and beyond. Among other roles, today he is liaison to the Episcopal Church's Executive Council Standing Committee on HIV/AIDS and chairs the Commission on AIDS for the Diocese of Atlanta. The San Francisco conference also marked the genesis of the National Episcopal AIDS Coalition, whose board of directors Garner has chaired.

While AIDS continues to infect and kill people – the U.S. Centers for Disease Control report that more than 18,000 people with AIDS die annually in the United States and an estimated 56,300 Americans become infected with HIV each year – perceptions, treatment and the demographics of the disease have changed since the 1980s. The church's awareness of and response to AIDS have changed along with them, with some Episcopal ministries growing and evolving, others dwindling. Yet the need remains, advocates say.

'Willing to be inconvenienced'

Looking at the future of Episcopal Church AIDS ministry, current NEAC board Chair Lola Thomas sees the need for increased hands-on ministry. Her own organization, the AIDS Alliance of Northwest Georgia, offers various educational and supportive services but always has included personal assistance for HIV/AIDS patients, whether they need a ride to the doctor or someone to feed their fish while they're in the hospital.

"I want the church to be willing to be inconvenienced," Thomas recently told the NAEC board. "People don't just die on our schedule. When people are in great need, many times that means that you have to jump in there and be willing to be inconvenienced.

"I really see ministry for people living with HIV to some extent being made a part, but a vital part, of just ministry in the church."

"Whether someone has HIV or they have cancer or they have whatever they have, it can be brought into ministry in a more inclusive way," she said, adding that this might help combat the continued discrimination against HIV patients. "We would also love to be able … to provide more education to people in those parishes throughout the church so that they themselves are not afraid of HIV."

"In the early days," Thomas said, "NEAC convened a lot of educational programs and had conferences that all focused on HIV and AIDS, and this was at the time when you saw a lot of care teams in churches."

NEAC stopped offering conferences after attendance dropped during the 1990s, perhaps because people no longer needed the same education or because the crisis had shifted with the advent of new medications, she said. The coalition began working more "behind the scenes" and with individual groups, she said.

NEAC recently launched a new website as part of an effort to revive its networking role, said Matthew Ellis, executive director of NAEC and Episcopal Health Ministries.

At the grassroots ministry level, "it's sometimes difficult to know exactly what's going on out there. … We've not had a mechanism for people to connect," he said. The hope is that NAEC's site can spotlight best practices, list resources – including educational tool kits and curricula – and foster connections among people who otherwise can feel isolated in their ministry.

"One of the things that really we're looking to do is to really expand that network and to make people feel part of an AIDS community again in the Episcopal Church," Ellis said.

NEAC soon will release a written strategy in response to General Convention's 2009 charge in Resolution A162 for it to participate in developing a comprehensive response to the HIV/AIDS crisis, Thomas said. "NEAC does still see itself as providing a means for people to do HIV ministry, whether that be by sharing resources, sharing stories, helping people see how they can do ministry in relation to HIV and AIDS."

Changing ministries

AIDS ministries have changed at the local level as well.

What's changed most during the 20-plus years since the crisis emerged, said Sidney Curtis of Gainesville, Florida, is "apathy."

"AIDS is on the back burner, and yet there are many, many new cases," she said. "The younger generation seems to feel, ‘Well, the meds make it safe,' and they still have risky sexual behavior. I don't know, education doesn't seem to sink in sometimes."

A former nurse and a parishioner at Holy Trinity Episcopal Church in Gainesville, Curtis was among a handful of mothers of HIV-infected sons who started the Gainesville Area AIDS Project in 1992. This followed the launch of the Holy Trinity HIV/AIDS Ministry, which began with support groups for infected people.

"There was certainly a much greater need at the beginning for support groups," said Terry Fleming, who is active with the church's ministry. While the stigma of having HIV/AIDS remains "substantial," it was much greater back then, when no medicines were available to treat the disease and people were afraid to touch infected individuals, he said.

Holy Trinity holds an annual AIDS awareness Sunday with a speaker and displays a section of the AIDS quilt made by church members to honor people connected with the parish who died of AIDS. For years, the AIDS ministry worked with the local hospital for pediatric AIDS patients, providing a Christmas party and gifts for affected children, but the need diminished with the advent of medical treatments that substantially decreased the number of babies born with HIV, Fleming said. Today, an annual gift "ingathering" also benefits local underprivileged children.

Other programs also changed. Parishioners visited prisoners with HIV/AIDS until new Florida Department of Corrections rules created "substantial barriers" to allowing volunteers to do direct ministry with inmates, Fleming said. For years, the church ran a retreat at the Diocese of Florida's Camp Weed for people with HIV/AIDS and some caregivers, but ultimately few people from Gainesville were attending, he said. "Most of the other AIDS ministries stopped meeting [in the diocese]. We were doing it for the entire diocese, and we just couldn't do it anymore."

The Gainesville Area AIDS Project, which Holy Trinity supports, remains very active but is struggling with diminished funding in the sluggish economy, said Curtis, whose son Christopher died of AIDS in 1992. The group serves meals Tuesdays to 20 to 25 clients but stopped Friday dinners. The project distributes monthly bags of donated items such as toilet paper and razors not covered by food stamps. Until the sudden closure of Florida's Share discount-food program at the end of 2010, GAAP also distributed 39 food packages bought by Holy Trinity each month.

"We're in the process of trying to figure out some way, with the decrease in funding [to our organization], to pick up the food program again," Curtis said.

GAAP and its mission haven't changed much, but the clientele has shifted from mostly gay men in the beginning to people "across the board," she said. "We have Afro-Americans, we have grandmothers, we have wives."

The disease's shifting demographics affected the church's awareness and response, Garner said. "What began to change, especially with the Episcopal Church, is that as people died off, we no longer saw people in our own parishes who were infected. … It was out of sight, out of mind."

"The racial demographic shifted dramatically, and most of those being affected were people of color, and the Episcopal Church is not a church of people of color," he said. With improved treatments, those in the pews who are affected "don't exhibit for the most part the standard symptoms of the wasting and the tremendous weight loss."

In the early days, "there was no hope," Garner recalled. "There have been radical changes in the epidemic. The advances have not necessarily helped the cause because it provides people with that excuse that many have always wanted to not pay attention to it."

While many consider AIDS a "manageable condition" because of new medications and treatments, it is manageable only if one has resources to provide for those medications and treatments, can comply with the medication regimens and has a high-enough literacy level to understand how to take the medications, Garner said. "For most of the people who are now infected, those ‘ifs' outweigh the manageability."

Other obstacles remain.

"There is still a tremendous amount of stigma associated with the HIV infection, particularly in rural places and the rural South," he said. "You wouldn't go to the public health department to get tested because everybody knows you."

The AIDS Services Coalition, which grew out of a ministry at Trinity Episcopal Church in Hattiesburg, Mississippi, has tried to address that by administering rapid HIV tests at its facility as well as health fairs and other venues, including twice-monthly "testing Tuesdays" at the University of Southern Mississippi. If someone's blood tests "reactive" to the virus, a coalition phlebotomist can draw blood for a confirming test and deliver it to the health department, although the coalition still must provide the person's name to the department, explained Kathryn Garner, coalition executive director.

Besides educational and testing programs, the coalition offers transitional housing for homeless people with HIV/AIDS, a food pantry specifically for HIV-positive people, support groups and funding for items typically not covered in other ways, such as medication co-pays and utility bills, she said. "We've paid for half of somebody's dentures … I've paid for a haircut for one of our residents. There's significant ability to do some quality-of-life issues."

"We're the only comprehensive AIDS organization in our area," she said. The program began as an outreach of the church that provided temporary housing with no supportive services. Today, the executive director said, the clientele "is more hardcore homeless than it was to begin with. These are people that are difficult to house. … Many times with the folks that we deal with now, their HIV status seems to be the least of their problems."

AIDS ministry today, she said, is "maybe a bit more overwhelming because in Mississippi HIV is just … in a long list of things that in many cases point to poverty." Eighty to 85 percent of newly diagnosed people at one of the coalition's clinics already have AIDS, meaning "they're not getting regular health care," she said. "They're waiting until they're sick or symptomatic to come in and get help. It means that they're a lot harder to treat and a lot more expensive to treat."

"The truth is," said NEAC's Thomas, "poverty contributes greatly to the infection rates."

Thomas started the AIDS Alliance of Northwest Georgia, now an independent nonprofit, at the Episcopal Church of the Ascension in Cartersville, 40 miles north of Atlanta, in the early 1990s and also plans an annual retreat for caregivers and people living with HIV/AIDS at Kanuga, the Episcopal Church-affiliated conference center in North Carolina.

The alliance has grown from offering personal services to mostly very sick people – "up until about ‘96 a lot of our effort was in serving people who were dying" – to helping people along the continuum of HIV infection and running a government-funded program providing permanent housing and support services for individuals who are homeless, disabled and HIV-positive.

After the introduction of protease inhibitors to combat HIV led to people living longer, she said, "The focus then began to be on helping them as they learned to live with this. Not that we didn't still have people who died after that, but there began to be a lot of hope then for people, and so the needs began to shift and change. We never, though, saw a time when we didn't need to be here."

The alliance provides education, support groups, free HIV testing and counseling, and transportation to receive medical care for clients in five counties. From the beginning, it offered personal services for individuals needing help.

"One of the first people that came our way had relocated to our area," Thomas recalled. "He was very sick, but he wouldn't go home to his family because of what he had, so he was in our area with absolutely no support. … He would go in the hospital, so we would take care of his apartment and feed his fish."

While "we have a list of things that we say we do," she said, "you will never pin me down. If someone's dog needs to be walked while they are in the hospital, we walk dogs."

That's the sort of hands-on help she'd like to see across the church, she said.

The need for AIDS ministry remains, Bruce Garner concluded. "The difficulty is helping people understand the need and then reaching them."

Episcopal News Service
Sharon Sheridan is an ENS correspondent.