Maybe you’re old enough to remember when people first began dying of a disease that caused a catastrophic breakdown in the body’s ability to fight disease.
Young people were being killed off by infections the body normally kept in check with ease. Young men, particularly, were walking into hospitals with thrush, pneumonia, and lesions from a form of cancer, Kaposi’s Sarcoma, normally seen in elderly Mediterranean men.
In the years between isolating the human immunodeficiency virus, HIV, and the development of an arsenal of life-saving and life-extending antiretroviral drugs, AIDS was increasingly seen as a death sentence. Its terrifying spread continued around the world, and hundreds of thousands died with only the most rudimentary palliative care available … wasting, suffering, while a helpless world looked on.
I bring all that up because it’s a reminder of how HIV and AIDS have only been with us for a relative blink of an eye in human history.
Even with some of the world’s best minds working on prevention, and a cure, the disease is still not fully understood.
I got to spend time while in Peru with a small and fascinating set of individuals who have been HIV-positive for years, and never get sick. Their viral loads are small enough to be almost undetectable, their disease-fighting cells are still present, numerous, and working to fight disease. These men control their HIV. A year ago I stood in a graveyard in Soweto, outside Johannesburg South Africa and watched as hundreds of young and middle-aged people were buried after dying of AIDS. Now, I was in Lima, chatting comfortably with a man who’s been HIV-positive for years, chubby-cheeked, lighting a cigarette, and discussing how little his life has changed in the years since his diagnosis.
This tiny band of people around the world are called “elite controllers”… meaning their bodies control the HIV virus in their systems in a way surpassing other patients who might not immediately develop AIDS after their infection. Researchers have known about them for years, but the advances in science have made it possible to know these people down to their molecules.
If a clinician encountered a man in 1990 who was infected, but never got sick, it was interesting, it bore watching, but the ability to figure out what made that person’s immune level tick down at the cell level was limited. Today, elite controllers around the world are pulled into the orbits of clinical trials. They are monitored, checked, give blood and tissue samples … poked and prodded and examined … and powerful computers and genomic studies make it possible to find what’s similar and what’s dissimilar about their cases.
Apart from just the “gee-whiz” reaction to their existence … these elite controllers offered contrasts: While one person I spoke with said he’s hardly changed his life at all in the years since his diagnosis, another told me he takes better care of himself almost as a responsibility to others. The two offered a study in contrasts … one with a high-degree of self-consciousness about what it meant to be a medical oddity and what use it could be to others, and one who seemed not to see himself in that way at all.
Try to put yourself in their shoes for a minute. How would you react to finding you were infected with a virus that was known around the world as a scourge, the source of untold suffering, and one that had carried away friends for years. And you don’t get sick. Just knowing about these people got me thinking hard about what change this unusual status might bring to a person’s life.
These days in many countries, even poorer ones, AIDS is no longer seen as an automatic death sentence. What separates countries, and sufferers, from one another is poverty and wealth, the availability or lack of access to antiretroviral drugs. The world has been through a lot with this tricky and persistent virus. Peru’s elite controllers bring genomic diversity to the growing portfolio of research into groups of elite controllers worldwide, and will have plenty to tell us for years to come.
You can watch Ray Suarez’s reports from Peru on our Global Health Watch page.