Mark Senak’s post, “World AIDS Day: The Past Cannot Be the Future,” inspired me to write an epic comment about different perspectives on illness and care delivery, so I adapted and expanded it to share here:
I recently read Susan Sontag‘s two essays, “Illness as Metaphor” (about TB & cancer, published in 1977) and “AIDS and Its Metaphors” (published in 1988). Sontag’s opening lines about the “kingdom of the well” and the “kingdom of the sick” helped animate for me the experience of a newly diagnosed patient (who now can go online to talk with other pioneers, form posses, share maps, and better navigate).
She wrote the first essay when she was a cancer patient and discovered the outrageous truth:
In France and Italy it is still the rule for doctors to communicate a cancer diagnosis to the patient’s family but not to the patient…Cancer patients are lied to, not just because the disease is (or is thought to be) a death sentence, but because it is felt to be obscene — in the original meaning of that word: ill-omened, abominable, repugnant to the senses.
In 1988, vicious metaphors were springing up around the new “enemy” of HIV. As she writes: “Now the generic rebuke to life and to hope is AIDS.”
Sontag’s essays include references to the European experience of TB, cancer, and AIDS, but less about the African, South American, or Asian experience. And, of course, Sontag’s essay itself is now an artifact. So I turned to João Biehl and his ethnography of AIDS therapies in Brazil:
Will to Live tells how Brazil, against all odds, became the first developing country to universalize access to life-saving AIDS therapies–a breakthrough made possible by an unexpected alliance of activists, government reformers, development agencies, and the pharmaceutical industry. But anthropologist João Biehl also tells why this policy, hailed as a model worldwide, has been so difficult to implement among poor Brazilians with HIV/AIDS, who are often stigmatized as noncompliant or untreatable, becoming invisible to the public. More broadly, Biehl examines the political economy of pharmaceuticals that lies behind large-scale treatment rollouts, revealing the possibilities and inequalities that come with a magic bullet approach to health care.
I would love to hear about other sources of critique and history from across the world.
Switching gears, going from history and ethnography to numbers, let’s review the basic math of health services delivery in the U.S., beautifully, devastatingly summarized by Peter Margolis of Cincinnati Children’s and the C3N Project:
.5 x .5 = .25
As he recently explained:
The dominant paradigm of chronic care delivery in the US is characterized by health “services” “delivered” to relatively passive patients or “consumers” in clinician-mediated encounters during using knowledge that is produced by researchers and clinical experts. In this current system, physicians provide only 50% of indicated care and patients adhere to about 50% of what is recommended. The result is a system where only about 25% of patients achieve optimal care, despite spending that far exceeds other industrialized countries. What would outcomes be like if doctors and patients got what they needed 90% of the time?
For people living with HIV/AIDS, of course, the implications are more grim:
Only 28% of Americans with HIV are getting optimal care
Read the full Washington Post article if you have time – the new shared history of this illness is being written today.
Susannah, I’ll stick my neck out here –
I have a strong sense that you have a point here, but I can’t tell what it is. Or was this just a pensive reflection, without point of view?
I’d say it’s a pensive reflection, not a call to action. I’d encourage anyone who has time to dive into any of the sources I highlighted for further information/edification. The photos associated with “Will to Live” are worth a click on their own, for example.
Here’s a call to action: Know your status