The Strange Phenomenon of Pentecostals Who Decline HIV Treatment

Churches are encouraging patients to leave their lives in God’s hands.

Bill came home from the grocery store to find his front hallway bathed in sunlight, the air smelling of roses. He looked around, plastic bags in hand. When a man’s voice spoke to him, he knew with perfect certainty that it was the voice of God. God reassured Bill that he would be healed of the HIV he had lived with for more than 10 years. The long struggle was over, God reassured him; from now on he would be healthy.

Standing in the hall, still clutching his his grocery bags, Bill felt calm and comforted. His burden was lifted.

Two weeks later, I saw Bill as a patient at my HIV clinic. He described his vision embarrassedly at first, but grew more and more enthusiastic in the telling. “It was a wonderful feeling,” he said. In a final rush he confessed he had stopped taking his HIV medications.

“I know, I know, it sounds crazy. It is crazy,” he said. “But I think I have to follow this through.” He alluded to the biblical parable of Abraham and Isaac, to faith that transcends reason. “This is my test,” he said.

I made sure he understood the risks of his decision. I did a careful neurological examination. I assessed Bill for signs of psychosis or delusional thinking. His partner Kay was with us and confirmed that Bill had been behaving normally otherwise, at home and in the floral shop they share. Kay was horrified by Bill’s decision. Also HIV-positive, Kay had taken HIV medicines for nearly a decade, too. “How could he throw it all away?” Kay asked.

HIV medications are widely regarded as a miracle of modern medicine. They have turned the HIV epidemic on its head; while HIV was once the leading cause of death among young Americans, life expectancy among people with HIV is now nearly normal.

HIV medicines are also much easier to take in 2013 than they were in the 1980’s and 1990’s when patients with HIV took dozens of pills each day on a byzantine schedule that made adherence almost impossible. Side effects were legion, and frequently debilitating.

In 2013, most patients with HIV take one pill once a day and side effects are much less severe. A patient who recently started HIV therapy in my clinic berated me afterwards for frightening him. He said, “Your doom and gloom warnings about ‘the possible side effects’ were the worst side effect of all.”

Even today, HIV medicines don’t cure HIV—treatment is lifelong. Skipped doses and treatment interruptions can cause viruses to grow resistant, and treatment to fail. By not taking his medicine, Bill was playing Russian roulette.

Bill and I met again several times in the ensuing months. The conversation was always the same: He was frightened by his decision to abandon lifesaving HIV drugs but felt bound to follow his faith. I told him I was deeply worried, and urged him to reconsider. But I reassured him I would not abandon him, whatever his decision.

I checked Bill’s labs. When the virus was under the medication’s control, his immune system was strong, but now there were millions of viral particles in each drop of blood and his immune system was in tatters. Bill grew tired. He lost weight. Common colds terrified him; each cough could be a harbinger of the end.

There’s an old joke about a faithful climber who hangs by a branch off the edge of a cliff. He turns away a rope and a helicopter rescue, and even declines to fly when he magically sprouts wings, each time proclaiming “God will save me!” Eventually, he falls, and accuses God at St. Peter’s Gates of abandoning him.

“What do you want from me?”  God asks. “I sent you a rope, a helicopter, and wings. You can’t help some people.”

Watching Bill was like watching a car accident in slow motion. But during one clinic visit, midway through the collision, Bill was radiant.

“This time is different, Dr. Lahey. I can feel it.” That Sunday in church a faith healer from another community had visited Bill’s Pentecostal congregation, and had singled out Bill from the dais.

“The healer put his hands on me, here.” Bill put his palms on his forehead. “He told me ‘the sickness you have struggled with is now cast out. You are healed.’” Previously, Bill had confided his HIV diagnosis to his pastor, but he trusted the pastor had not revealed this secret to the visiting healer. Bill talked excitedly about the service that followed, the music, the singing, Bill’s public confession of his HIV infection, and the love he felt from his congregation. “I used to be a pariah,” he said, describing years of ostracism for his homosexuality. “Now look at me,” he said, beaming.

I asked Bill what his pastor and fellow parishioners thought about his decision to stop HIV treatment. “They totally support me,” he said. “In fact, it was their idea.” His congregation had encouraged him to stay off his HIV medications despite his doubts, to see this revelation through “to the end, whatever may come.”

He left my clinic smiling. After decades as a gay outcast in a conservative church, he felt loved and included—as long as he did nothing to stop his march toward AIDS and death.

In time, Bill developed painful sores in his mouth. Then he was hospitalized with pneumonia. Kay became more and more distraught.

Bill is not alone in his church’s insistence that welcoming a preventable death is somehow an act of faith, that stoic acceptance of sickness and death are the only road to the conditional love of his Pentecostal brethren. The BBC reported recently that many Pentecostal congregations have advised their parishioners to skip HIV therapy and, like Bill, leave their lives in God’s hands.

This is a time of medical miracles. Every day, the faithful benefit from vaccines, transplants, and insulin. But the most vulnerable members of the congregation, people with HIV, are being abandoned in the name of faith. The pastor telling Bill to forgo the miracle HIV treatment is like Jesus turning the loaves and fishes into a feast for the multitudes—but telling one follower to go home hungry. But that is not how the Gospel goes.

At the moment, Bill is out of the hospital and still off of HIV medications. But another infection will come. And another. Before it’s too late, let’s hope Bill sees the rope from above, the helicopter next to him, and the wings sprouting from his back. If he doesn’t, if Bill dies, I lay that sacrifice on his congregation’s altar.

Names have been changedBill is an amalgam