Sometimes we hear “there are no bad answers, no bad decisions”. It’s a warm and fuzzy concept that fits with the non-judgmental services we as a community provide. Trouble is it's wrong. Undeniably bad decisions are being made all the time. (You likely made one last time you ate.) On the treatment front, for example, Charlie Sheen made a bad decision. And then there is this from an earnest HIVer on Facebook “When to start treatment? It's best to wait until there is a patch, a spray or a cure.”
In my earlier article “Dumbing down HIV treatment hurts everybody” I looked at the phenomenon of "treatment denialism" which from any rational perspective is becoming as misguided as the more well established "AIDS denialism". True, treatment denialism has respectable roots – born of a historic distrust of big pharma and its products – but ultimately it’s a dog of an idea.
Even in an era where our modus operandi is to provide people with the facts, whether we are talking treatment or prevention, and let them choose the way they want to go, opting out of conventional treatment options remains, frankly, a dog of an idea.
That sounds judgmental, I know. We don’t do judgment, right? Not our job. Or not your job if you work as a service provider. But I’m not a service provider. I have less constraints than you do. And so when I see dumb, I call it.
But then . . .
One person’s dumb is another person’s best shot. One person’s dumb is a desperate person challenged to make the right decisions every time. One person’s dumb is another person’s only hope to retain control – some control - over one tiny aspect of their life. One person’s dumb is another person’s struggle to understand English. One person’s dumb is another person who is addicted, who has lost their health card and whose primary need is for food and shelter. One person’s dumb is another person who can’t think straight, because they were born that way.
Where I’m heading with this is that our standard of care – which revolves around providing people with all the information they can handle (or we think they can handle) and letting them decide what is best for their health, sexual or otherwise, can fall flat on its face. In fact we know it does, or the epidemic would have ended yesterday. And it' no coincidence if flourishes in the most marginalized, the most challenged perhaps to make good decisions.
Not that we are inept about recognizing psycho-social factors like the ones I’ve been talking about. Yes, service providers are well drilled in the social determinants of health – things like poverty, underemployment, illiteracy, under-housing, incarceration, inadequate coping skills and social support networks plus a whole cornucopia of mental health issues. Syndemics even. But how good are we in accommodating all those factors into the help we provide people in making decisions that are right for them, (CATIE has an excellent article which touches on this aspect here by the way and which suggests holistic solutions to the needs of those with multiple over-lapping challenges.)
Right now, though, if someone is illiterate or depressed or has autism, for example, how good a job are we doing in helping them making decisions? Does the standard model of “we present you with the science, now it's your turn" work?
Tell me I’m wrong if I say ‘probably not well" or we would not be seeing the rates of new infections that are occurring today.
How do we accommodate special needs? People with autism, for example, tell me they learn differently and that because of their condition they are more susceptible to infection in the first place, that standard prevention messages don’t work for them and that adherence, when they become infected, is a special problem for them too. More generally, how about people with learning disabilities, people struggling to understand English, yet alone the complexities of viral suppression? Together those who are challenged by our standard assists in the decision-making process are surely a sizeable population. And it doesn’t help that the multiple problems some are faced with in 2016 are very deliberately handled in a more “siloed” way with care distributed through a variety of social service agencies.
The result? Falling through the cracks is endemic. Even emerging, the disadvantaged person is easily lost in a sea of confusion as service providers recite the science of transmission or viral suppression or similar apparent gobbledygook.
Bottom line: our standard model of providing the facts about treatment, the facts about prevention alternatives and leaving the person to make what can be a life-changing decision – cannot and will not work all the time. This stuff can be complicated.
Is dumbing down the information so that it is comprehensible to all the answer? Not usually. Said one treatment expert at CROI 2016 last week, speaking of people with HIV as a whole, “Don’t give them a dumbed-down message and talk in absolutes. In my experience, people want nuanced information about their risk of infecting others and want to be able to make up their own minds.” But doesn’t that assume an audience capable of processing “nuanced” information that is often quite technical and requires a degree of critical analysis?
All this is taking pace against a backdrop of research that indicates that starting treatment on the day of diagnosis is not only popular but produces the best health outcomes and best levels of engagement. San Francisco's RAPID program is an example of what we might well see normalized elsewhere. The implication is that for optimal outcomes, the decision-making process is an accelerated one. But is that a good fit for people who, for various reasons, are challenged to make good decisions in a hurry? Are they consigned to receiving sub-optimal care?
So what are the alternatives? Enforced solution that trample on human rights are clearly out. I think I made that clear in my previous article. And while I offered suggestions there to aid people in better decision making, I must confess those came from a normative perspective. They do not fit so well with people seeking help – or not – with a range of barriers to comprehension, understanding and sound decision-making.
I am sure there are models out there where service providers are adept at meeting the needs of people challenged by language, intellectual ability, mental health and fragility of many kinds but, except in a few cases I don’t know well what those models are.
People with these special challenges are required to make hard, sometimes science-based decisions all the time. What strategies are out there to help these people make the right choice?
Are we doing enough? I think it’s an important conversation.