A mystery illness, and the importance of research dollars – Dr. Charles van der Horst

During my medicine internship in New York City in 1980, I picked up a new patient in the emergency room one evening.

Already on a ventilator, his lungs were filled with the fluid of a diffuse pneumonia. Neither friends nor family were with him. He was cachectic like a survivor from a Nazi concentration camp. His skin sagged in places, loose with soft folds, all fat and muscle consumed by an unknown disease. His bones pushed against his pale epidermis, tent-pole-like protuberances that kept the skin lucent. Tied to his hospital bed, sedated, and oblivious to his own suffering, the concave hollowness of his abdomen, and the tilt of his head gave him a Christ-like appearance.

Suppressing the self-doubts of an intern, I proceeded to conduct a careful examination, reviewed his initial test results in an attempt to decipher the mystery of his illness. A thick white coating covered the inside of his cheeks. Around his rectum was a large ulcer, raw, red and moist. On his skin were scattered purple papules.

This constellation of physical exam findings was beyond my experience. My threadlike feeling of competence and organization bumped up against his presentation.

As his chest rose and fell in a pas de deux with the white bellows of the ventilator, I reviewed the test results, each one adding to my bewilderment. The biopsy of the lung showed the black dots of pneumocystis. The stain of the large ulcer revealed multinucleated cells consistent with herpes simplex. The coating in the mouth was candida albicans with transparent narrow tubular tangles, like Medusa’s head, glistening in the light of the microscope. A biopsy of the purple papules revealed spindle cells amid lakes of bright red blood, the image of Kaposi’s sarcoma.

Too many diagnoses for one person and all rare.

At that time I did not know that he was one of the first patients with what would be called AIDS. We did not know that a virus was destroying his immune system rendering him susceptible to unusual infections and cancers. There were no tests to diagnose the infection, no measures of monitoring progression of the disease, no medications to treat the disease or prevent its complications.

The Centers for Disease Control announced the new syndrome in June 1981. More and more people were diagnosed over the weeks, months, and years that followed. Fear struck health care givers and the wider community. A feeling of helplessness in the face of the deadly unknown prevailed.

Over the next 16 years research conducted by the National Institutes of Health and CDC-funded scientists, many at Duke and UNC, and scientists at companies, including GlaxoSmithKline here in North Carolina, led to the development of many new medications to treat HIV and its complications. Advocacy from patients forced the Food and Drug Administration to speed up the process of drug approval and to permit access to medications even before final approval. These medicines allowed patients to live a normal life and to virtually eliminate mother to child transmission of HIV.

These miracles of science were all launched by taxpayer-supported agencies, specifically the NIH, CDC, FDA, the 50 state public health departments, and our research universities. Epidemiologists at the CDC monitored the spread of the epidemic allowing us to target our prevention efforts. Scientists at the FDA facilitated drug development. Thousands of pre-doctoral, doctoral, and faculty researchers were part of the army that made the discoveries. Legislation provided funding for the medications and housing for the homeless.

Despite my efforts, my patient’s disease was too advanced. Supported by the ventilator, he was unmoored from anyone that cared for him. In the end, the diagnoses were made, but I was left with the frustration of not understanding why. He died, joined by many others for want of life-saving, non-toxic medicines. That changed in 1997 with the discovery that treatment with three different medications could completely suppress HIV. Painstaking, federally funded research and the generosity of patients who participated in research studies showed us the way forward.

Charlie van der Horst is Emeritus Professor of Medicine at UNC and a global health consultant. Follow him on Twitter @chasvanderhorst