Chronic Illness • May 12, 2016

What do AIDS and medical errors in children have in common?

Last week, Johns Hopkins announced the release of its study showing that medical errors were the third leading cause of death. As I heard the news anchor announce the findings, I felt like someone had kicked me in the stomach.

Like most physicians, I became a doctor because of a burning desire to help people, to make them better. Studies like these are important and needed to focus our attention, but they can also be overwhelmingly sad and can lead to a bit of despair. How is it that we work so hard and this is the result? But tonight, thanks to an assignment my teenaged daughter was given, I was reminded of a huge win; one I watched unfold as my career as a physician began.

H1N1, Ebola and now, Zika: they all came roaring into community awareness and were covered extensively by the press while the medical community searched for ways to contain them. Their numbers decreased and they were relegated to a less conscious place while the next big threat took center stage. Such was the AIDS epidemic in the US in the 1980s. It was, in some ways, the first of these modern day threats to permeate our consciousness and cause otherwise rational people to do irrational, fear-based things to families with infected children.

The disease called AIDS was first identified in 1981 as physicians realized there were a large group of men with the same severe and unusual symptoms. By the end of that year, they had confirmed 270 cases and 121 of those people died. In 1982, the disease was given a name, Acquired Immune Deficiency Syndrome, AIDS.  But physicians were still two years away from learning what was causing these patients to die, and their numbers were increasing rapidly.

As fear and fatalities rapidly increased, physicians and scientists around the world focused their efforts on finding the cause of AIDS. In 1984, HIV was simultaneously identified as the virus that was causing AIDS by three separate teams led by Drs. Robert Gallo, Luc Montagnier and Jay Levy. Once the virus was discovered, the work of preventing it from spreading and discovering treatments could begin.

Until then, fear was spreading quicker than the disease. Children with AIDS were prevented from attending schools or playing with friends. Homes of people with AIDS were burned and because the disease was first discovered in gay men, judgement and blame were placed on people who had simply caught an infection.

In the early years of the epidemic, patients were very sick and, despite our best efforts, many of them died.

By 1994 AIDS had become the number one cause of death for all Americans age 25-44. The following year, as a medical student, I went in to see a patient during my rotation in the internal medicine clinic. He was about my age, and told the story of putting off a visit to the doctor because of the cost; eventually making an appointment because he just kept feeling worse and couldn’t seem to gain weight. As he took off his shirt to be examined, my eyes fell on the purplish lesions all over his chest. And in those few seconds, my mind did the math: the purple lesions were Kaposi’s Sarcoma, Kaposi’s Sarcoma means AIDS, AIDS means this young, relatively healthy looking man was going to die.

In the years that followed during my medical school training and residency, I saw many children and young people grow sicker and thinner, and then die as AIDS ravaged their once healthy bodies.

But I promised you a happy ending to this story, and thanks to the focused attention of those in medicine, I am able to tell you one.

Vertical transmission of HIV (infection of an infant through exposure to maternal virus during pregnancy or labor and delivery) accounts for most HIV infection in infants and children worldwide. Prior to 1994, if a woman had HIV while she was pregnant, often her baby was born with HIV. With few treatments, many of those babies grew sick and died. Then, in 1987, The FDA approved the first drug to treat HIV, called AZT. It was the second foothold; we knew HIV caused AIDS, and now we had a drug that slowed it down. By 1994, studies concluded that treating pregnant women and their babies with AZT was safe and led to a 67% decrease in the risk of perinatal HIV transmission to the baby.

By 1996, the US saw the first decline in the number of AIDS cases and AIDS was no longer the leading cause of death in people ages 25-44.  

Today, my colleagues and I often see pregnant women with HIV who were born prior to the 1994 discoveries. HIV was transmitted from their mothers to them during the pregnancy or delivery. They have lived two or three decades with the disease, something we couldn’t imagine when I started training. They are careful to get good care and take their meds. Their viral load, the measure of how much HIV virus is in their body, is often undetectable. They receive medications during delivery and give birth to babies — many of whom test negative for HIV and go on to grow up healthy and HIV free.

We went from an epidemic beginning in 1981 to a pandemic. Then, medical science solved the mystery of what was causing AIDS, discovered how to prevent it, how to rapidly diagnose it, how to treat it and then how to keep mothers from passing it to their babies. All of this happened within 20 years. Dr. Hirsch, Former AIDS Clinical Trials Group’s executive committee chairman, continues to be surprised by how far HIV research has come in such a short time, “In the early 1980s, hospital staff were afraid to enter the room of a person living with HIV because we didn’t know how it spread,” he says. “Now it is a manageable, chronic disease. I could never have predicted the progress we have made.”
If this could be accomplished with a frightening mystery disease, there is no question shining the light on medical errors can lead to the same result.

  • Read how St Louis Children’s Hospital is pioneering work to decrease medical errors in children here.
  • Click here to learn about the future-changing research currently underway in WU Infectious Diseases Division of St. Louis Children’s Hospital.

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