The Impact of Stigma, Superstition and Secrecy on Global Health
Imagine you are HIV+ and living in rural Kenya. Your small community will not understand nor accept this about you and so you live every day worrying that they will find out. They are the only family you know and you don’t think you have it in you to move away from the community and start a new life. You develop active TB and it is wasting your body away. Your community members implore you to participate in a TB study which will provide you with TB treatment for free! It seems like a miracle! Then you find out you have to take an HIV test in order to participate in the study. You are terrified that the results of your test will be shared with members of your community. It is very possible that if anyone finds out, they will blackmail you into keeping it a secret. The nurse in charge promises that your tests results will be kept private and explains that the contract she has in front of her guarantees this, but you can’t read so you can’t verify for yourself. You are just supposed to trust her. Since corruption is omnipresent in your country and she is a complete stranger, you just can’t put yourself in that position. With something as sensitive as HIV status, you simply can’t afford to be trusting. Faced with an impossible choice, you lie on your application for the study, providing a false name and address.
This is an all too common scenario in Kenya.
In the states we take things like privacy and confidentiality for granted. I cannot count the number of ethics trainings and classes I have sat through reminding me not to give out patient information or discuss patient data (like duh, right?). And I’m not even a med student. I will literally never see a patient in my life. “Patients” in my career are de-identified coded numbers. That’s how important values like confidentiality and privacy are in the medical field. While there have obviously been breaches in this ethics system throughout United States history, the day to day healthcare infrastructure lends itself to familiarity and trust. It is because of this, that study participants feel comfortable with providing sensitive information and/or samples. There is trust in the relationship between scientist and “test subject,” not to mention a fat contract stating that privacy will be respected. I’m in a study right now and I have zero concerns that my data will be leaked or shared with anyone. Kenyan scientists and doctors are similarly trained and there are similar contracts in place but the resulting trust that we take for granted in the states just doesn’t exist. This gap can be boiled down to a few things:
1. Medical care is generally uncommon.
People in Kenya don’t get regular checkups. They don’t build a rapport with a family practitioner. A doctor is just another stranger to them.
2. Western medical practices are misunderstood.
On top of that, superstition feeds into a mistrust of medical practitioners, especially in remote communities. To this day, scientists have to combat the notion that healthcare workers are vampires for drawing blood. Fucking vampires. Let that sink in.
3. Lack of familiarity with the concepts of Confidentiality and Privacy, with a capital C and P.
Okay let’s be honest for a sec… most of us have probably watched one of the following shows at least semi-regularly at some point in our lives: ER, Grey’s Anatomy, House, or General Hospital. If not, you’ve probably at least seen some Law and Order or Judge Judy. Familiarity with medical and legal jargon means that something like “confidentiality” as a binding contractual term makes sense to us. It’s such an obvious thing that when presented with the whole spiel, I’m just like “Yea, yea I know. Give me the contract to sign.” But those words don’t have the same weight in Kenya.
And most imporantly…
Higher authorities in Kenya are SUPER corrupt! Just go take a gander at the events preceding the most recent presidential election in Kenya. (TL;DR — Their supreme court had to nullify the whole damn thing because it was just so corrupt. An election official was fucking tortured to death.) And it’s not like corruption exists only at that scale. It seeps into regular people’s day to day lives. The number of people who told me stories about “that one time they had to bribe the police” was astounding. And they talk about it like it’s a totally normal part of their lives. BECAUSE IT IS! Even my mom and I were held up by cops while on a safari. A SAFARI. Is nothing sacred? Lucky for us, our driver/guide handled it, but it was still so sketchy. They took him behind a semi truck on the side of the road in the middle of rural Kenya for about a half hour. Because they could. And we just had to sit there, and wait, and stare at these dudes with rifles pacing around our Landcruiser. Because what else were we supposed to do? It’s the freaking police. You do what you are told. Needless to say, the Kenyans are justifiably worried about being taken advantage of by people in authority positions and that fear gets projected onto healthcare workers.
So the scientists and doctors adjust their practices to accommodate this concern from the participant. For example, no form of physical identification is required to participate in a TB study. That would be too reminiscent of the police and would scare people off. So in order to increase participation, we don’t require it. That also, however, means that people don’t have to provide honest information because no one is going to check. And many don’t, because again, they don’t quite get that the information will indeed be kept secret. It makes them feel safer to lie.
So they lie. And who can blame them?
Of course that makes our job way more difficult because we sometimes have to go find these people, give them medication, do follow up surveys, take additional samples, etc.
But this is the reality. Superstition is a thing. HIV stigma is a thing. Illiteracy, coercion, fear and dishonesty are all very real components of the healthcare system (if you can call it that) in Kenya. As scientists, it is our task to find ways to work within this broken system. A huge part of how we do this, is to tap into community resources and relationships through Community Health Volunteers (whom I will talk about in my next post). Of course this means taking a back seat in terms of patient interaction, which, for me, is yet one more barrier between me and the people I’m supposed to be “helping.” At first that gap sort of bummed me out. Then I realized that my feelings didn’t matter because this also adds one more layer of protection for our participants’ identities. At the end of the day, improving the well being of the Kenyan people is THE GOAL of my thesis project, which should include security and peace of mind.
So fuck it, they can keep their secrets. We’ll deal.
Originally published at thebasicscientist.wordpress.com on September 14, 2017.