The Strange Phenomenon of Pentecostals Who Decline HIV Treatment

Churches are encouraging patients to leave their lives in God’s hands.
A healing "laying on of hands" ceremony at the Pentecostal Church of God in Kentucky in 1946 (Department of the Interior)

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.

Presented by

Tim Lahey, MD, is an infectious diseases specialist and associate professor of medicine at Dartmouth's Geisel School of Medicine. He writes regularly at MedMurmurs.

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