Faith on the Fast Track: the church’s history of response to HIV
In January 1996, my housemate Scott and I drove our other housemate, Bill, from the house we shared in midtown Atlanta to a sprawling craftsman style bungalow with a wide front porch that provided a perfect setting for a row of wooden rocking chairs. The house overlooked a large park and Bill’s new bedroom on the second floor offered a view of a bright blue sky that served as the backdrop to the branches of huge oak trees that had lost their leaves for the winter. I remember moving Bill in and looking out that window at that bright blue say.
God, I hated that view.
The house was perfectly lovely, but it was marked with death. It was a residential hospice facility that provided a home-like environment for people dying of AIDS to take their leave of this world in a place where they would be treated with kindness, compassion, and dignity at a time when kindness, compassion, and dignity were in short supply. The facility was called Haven House and the staff there were great at what they did, demonstrating a deep commitment to their job. Nonetheless, I hated the place.
Bill was blind from cytomegalovirus. A combination of peripheral neuropathy and a systemic infection in his middle ear left him unable to walk. He weighed about 42 kg. He was dying. His doctor stopped all treatment for opportunistic infections and prescribed a palliative medication regimen. She did, however, maintain Bill on his antiretroviral combination of AZT and 3TC. She even added a new medication: Saquinavir.
When we left him at Haven House on that first night in late January, Bill asked us to please give his boyfriend the valentine card he had bought a few weeks earlier before his eyesight had completely eroded: “You need to give it to him,” he said, “because I know I won’t be alive on Valentine’s Day.” Bill was calculating his own mortality in his head and figured that he had mere days left to live.
Well, it turns out that Bill was wrong. He did not die. Bill gave that card to his boyfriend on Valentine’s Day and on a warm, sunny early spring day in April, Scott and I returned to Haven House to bring Bill back home. He had gained about 8 kg and he walked out on his own; the infection in his middle ear was resolved. A few months later, Bill had surgery on his eye to re-attach his retina and he regained partial vision. By the end of 1996, Bill was back to his job as a shift manager at a local hotel. He still works for that same hotel corporation today.
Saquinavir, the first drug approved in the class of protease inhibitors, brought Bill from the edge of death and back into life.
1996 was the year when the fundamental calculations of HIV shifted. Infection was no longer a cause to assume, plan for, and calculate the likely days until your death. HIV became a chronic infection that could be managed with medications and not a terminal disease. 1996 was also the year that much of the Christian theological writing on HIV ceased.
I think there’s a link between the breakthrough in clinical treatment of the disease and the silence of the theological reflection on the disease.
For over a decade, pastors, laypeople, and academic theologians had called the church to respond to HIV. The World Council of Churches published its first comprehensive report HIV and the Churches in 1986. That report and many other publications like it called Christians to move beyond fear and rejection, break the silence of shame and stigma, treat people living with HIV with kindness and compassion, and call the government to action. We responded to the reality of so much death associated with disease by focusing on our shared humanity. But when death was no longer the inevitable, looming specter that haunted the course of HIV disease progression, most of the theological reflections ended.
The late 1990s was a time to catch a breath, give thanks for the reality of lives measured again in years not in days, mourn the tremendous loss of the millions who had died, and continue to advocate for a church that would open its doors to the queer folk like me who had lived through a decade-long litany of funerals and prayers for the dead.
It took the church in North America a few years to realize that there was still work to be done around the call to justice to make treatment available to those who were infected beyond the global north.
That delay when the West paused to catch its breath, marks us in the West with a horrible stain: our friends and partners weren’t dying inevitably and the epidemic became an issue of clinical treatment and public health prevention. Of course, millions were still dying even as some of stopped to catch and the epidemic continues to rage in the present. Black people in the United States were dying and infections were skyrocketing. Scores of countries around the world saw the number of new cases climbing exponentially without any access to the life-saving antiretrovirals that had so dramatically changed the course of the disease in the United States and Europe. These communities were not silent. Black pastors and theologians in the United States spoke out and acted out as they saw an ongoing rise in HIV cases in their communities; colleagues from across sub-Saharan Africa were sounding the alarm about the exploding epidemic in their countries.
UNAIDS played a role in awakening the world to the reality of what was happening in the rest of world and faith-based organizations like Caritas Internationalis and the WCC joined with their new Geneva neighbor to once again call churches to theological reflection, ministries of pastoral care and compassion, and movements for justice and advocacy as the new millennium approached. Within a few years, the Global Fund, and PEPFAR had both launched, in part because of such efforts.
We will, at some point, have to reckon with the cost of our silence during that time.
I recount the worst elements of this history to remind us of our own silences around HIV. Ashamed of our silence, some of us transferred it into stigma for people living with HIV. I recount that history’s best elements to remind us just how powerful our voices and our actions were when they were fueled by a vision of compassion, justice, and advocacy. Able to see again and to remember the shared covenant of our faith, we embraced those living with HIV and made space for their own voices and actions to lead us. Like all histories, the church’s history of response to HIV is marked by struggle, defeat, challenges, and triumph.
That history is still being written. The Interfaith HIV Conference, held every two years in conjunction with the International AIDS Conference, offers us an opportunity to rededicate ourselves as people of faith to the efforts to live into a world without AIDS. And we can see the path that could lead us there. It will take effort and resources and a commitment to continue and even re-double our efforts. We have the methods. Do we have the will? As people of faith, will we recommit to advocate to national government and global funders not only to maintain treatment targets and clinical systems but to expand them? As people of faith, will we ensure that the children living with HIV who have been part of our pediatric programs have everything they need as they grow into adolescence and adulthood to negotiate safer sex and responsible decisions of intimacy, marriage, and family? As people of faith, will we listen to the revelation of God revealed in the testimony of those still marginalized and silenced by the stigma of HIV infection—a stigma often fueled by religion?
Those are the questions in front of us. Theologically, I can’t help but wonder if the challenge in front of us is to see God at work in this epidemic not only in the midst of so much death and suffering and pain but in the midst of life. In protease inhibitor breakthroughs that brought Bill back from the precipice of death. In PMTCT protocols that have led to millions of children born to women living with HIV who are free of the virus. In simpler, more effective, less burdensome ART regimens that are now available throughout the world.
24 years ago, protease inhibitors became widely available and our churches turned the issue of living with HIV in the West over to researchers and doctors and civil society advocates. It did so because the church knew how to be kind to a dying “AIDS victim” but didn’t know how to grapple with more complex questions of life and risk for a “person living with HIV.” 16 years ago, after The Global Fund and PEPFAR had launched, too many churches in the United States turned the issue of living with HIV in other parts of the world over to researchers and doctors and civil society advocates. Surely, our faith—a faith grounded in the claim that resurrection supersedes death—has something to say theologically about living with HIV. The world doesn’t really think so. The number of researchers and doctors and civil society advocates who gather at the International AIDS Conference every two years dwarfs the size of the faith-based HIV response. But I believe something different. I believe that we worship a God who is active and loving in death, yes, but also in life. I believe that because in April of 1996, I brought my housemate Bill back home not to die but to live. That is testimony to the reality of medical research and advancement in clinical care. But it is also testimony to a God who sustains us as we pass through the valley of the shadow and sometimes walks with us not into death but back into living.
Achieving the vision of a world without AIDS will require the benefits of medical research breakthroughs and advancements in clinical care. But it will also require people of faith standing together as an act of faith to call our leaders to lead and keep their promises. For those among us not relegated to the social margins, achieving this vision will require us to listen to those whose voices have been ignored. For those of us who have been relegated to the social margins, achieving this vision will require us to trust that the Holy Spirit will give us words to testify to the grace we experience even when many in the world may refuse to see such grace at work.
This is our challenge. It is also our hope. And we are not alone. We are surrounded by a great cloud of witnesses who go before us. We are heirs to life. We are sustained by a God still active and working in this world to bring about healing, reconciliation, and peace.
We are rooted not in death but in life. We are redeemed by Love.
We have what we need to make this vision a reality. It is ours to choose. For millennia, God has offered us the choice: life and blessings or death and curses. Once again, the call before each one of you is to “Choose life so that you and your descendants may live.” What will your choice be?
This is text of a talk originally offered at a plenary session of the Interfaith Pre-Conference to the 2018 International AIDS Conference in Amsterdam. It has been edited to reflect changes in dates and context since that time.
Associate Research Professor Director, Interfaith Health Program (ihpemory.org) Director of Social-Behavioral Sciences, CHAMPS Network (champshealth.org) Rollins School of Public Health Emory University Affiliate Faculty, Graduate Division of Religion Laney Graduate School