Every Friday at Pack Health we bring in experts for brown bag lunch-and-learns. We gather round to hear about their work, and discuss its applications to what we do here. We’ve heard from leaders in the fields of nutrition, physical therapy, social work, psychology, disease management, and more.
Most recently, Mirjam-Colette Kempf, Ph.D., M.P.H — a Professor at the University of Alabama Birmingham — came in to talk about her work focusing on barriers to HIV testing. But she didn’t just give us an overview of her research. She shared insights on the bigger picture that really hit home:
I say it to my students – even if you get nothing else from this class, I hope that you go to your doctor and ask to be tested for HIV.
It was as though she could read our minds, each of us thinking how unlikely or even impossible it was we could be infected:
It may seem unnecessary like you’re not at risk so why do you need to get tested… but it’s not just about you or your risk factors. The reality is that most doctors are resistant to testing people because of the stigma. We’ve come a long way when it comes to pregnant women, where it’s a part of the standard docket of tests, but for everyone else — HIV tests are rare, even difficult to come by.
She pulled up a slide with a quote from a CNN commentator in 2013:
Then she shared from her own experience: the funny looks she got when she asked for the test; the exceptionalism demonstrated by the call she received when the results came in negative.
Getting Test Results
The test came back negative, said the voice on the phone. She’d had a number of tests that day, so she inquired: which test?
The test, came the reply, as though the nurse on the other line didn’t want to say the dirty word aloud.
You mean the HIV test?
Yes.
What about the other tests I had done?
You can assume they’re all negative if you don’t get a call otherwise.
What makes this test exceptional?
She points out the absurdity of this special treatment given to one test over all the others.
This exceptionalism with which the medical community considers HIV may have been necessary when the epidemic first hit in the 70s and 80s, when there was an urgent need for funding to better understand the disease and develop treatment, but it’s evolved to perpetuate a stigma that undermines testing and treatment in an age when the treatment exists.
Why is this a problem?
She pulls up a chart with statistics on HIV diagnosis and treatment:
This is called a treatment cascade, where we see huge drops from the number of people who have a condition, to the number diagnosed, to the number treated, to the number achieving the positive clinical outcomes.
We see similar statistics in testing and treatment of hepatitis C and depression, but why?
In a world where we have reliable tests and FDA-approved treatments for these conditions, the statistics are hard to fathom. You have to consider the bigger picture.
As Dr. Kempf put it in a recent article, you can imagine the barrier to care in small, close-knit communities when there’s this stigma making you want to hide your disease.
If we can normalize testing within communities and among providers, we can reduce the stigma associated with HIV. It’s a simple thing, asking to be tested, and it’s something every one of us can do to chip away at the stigma. And by chipping away at the stigma, we help to break the transmission chain between those most infectious (since not treated) and those vulnerable to HIV infection.
