What happens when you can't get your ideas straight

So, it was recently brought to my attention that the philosophical foundation that I’ve based my health program on is not actually one, but two separate ideas. So now I’m all “Fuck, what do I do?”, and meanwhile we’ve got patients/clients/community members/partners (what do I call them? That’s a whole separate can of worms) who continue to place demands on us, and I’m not entirely sure of what I’m doing.

So, to start with, the idea that I thought my program was founded upon was the idea that health (including healthcare, medical treatment, health education and, broadly, life itself) is not a commodity to be bought and sold, but rather is a human right. Therefore, access to high quality healthcare should be universal and have no regard for income, class, language, race, etc. And in the beginning it was good, and it all seemed so simple.

But then I found myself writing project descriptions—for grants, for the website, for newsletters, for individual donors. And I didn’t notice at the time, but I subtly shifted my writing and speech to the language of access. I wanted to increase access to medications, to medical treatment, to prevention programs, to concerned and genuinely compassionate doctors. Beyond generally believing that this was a good model, that this could significantly improve health outcomes, I think I did this as a way to water down my ideas about universal healthcare, as a way to make them palatable to donors and generally to the people whose support I need in order to reasonably (and by reasonably, I mean, “within my small organization’s budget”) make a difference in the lives of the people I work for.

Selling out, watering down my philosophy, I know. I’m not terribly proud that I would adjust something so basic as the reason that I do the work that I do so as to have more access to money, but hell, at least I’m honest about that.

Anyways, so, the thing is that generally these two ideas work fairly well together. The community we work for is marginalized, without access to health care, and in many ways shows a higher prevalence of a number of diseases because of this lack of access. Our record has generally shown that by increasing access to prompt healthcare, we’ve been able to (for example) reduce child mortality to zero (since mid-2007, where previously most women tell stories about at least one or two children dying) and successfully treat all new cases of tuberculosis, slowing the spread of the disease and decreasing the severity and length of morbidity. So far so good.

Our work has focused mainly on providing intensive follow-up, ensuring doctors and health institutions treat our patients respectfully and fairly, despite linguistic and socioeconomic markers which clearly label our patients as the migrant poor, and providing any necessary treatment. Notice, the first two go along with the “access” focus, while the last generally fits better with the “universal healthcare” aspect of my philosophy.

Where these ideas stop getting along is when we move to the borders of our target population, and begin working with the less poor, usually from other neighboring communities. Along these margins, access to healthcare is spotty, rather than completely absent. People will come to you with reports showing regular blood sugar testing over the past five years, with a few notable gaps, and ask for free testing and treatment for their diabetes.

There are two things you can do here. First, if you were strictly following the dogma that healthcare should be absolutely universal and free, regardless of ability or inability to pay, you would of course provide free testing and treatment. However, if you were looking at this from the perspective of providing universal access, you would see that these people already have some access, the way to ensure steadier access is to provide limited assistance, perhaps for testing or treatment, so that the family, with a reduced burden, will be able to consistently provide the rest.

So that’s what I did on Wednesday. Sounds eminently practical, and in an imperfect world of finite resources, where I work for a small NGO instead of running the world government, it’s probably the best I can do. I can’t, at the moment, handle another full-on diabetic patient (with testing, follow-up, home visits, doctor visits, and paperwork tracking prescriptions) and my organization’s modest budget will be quickly tapped out if we get in the business of giving free medicine to everyone who can in fact afford to buy it themselves. But it always feels shitty, turning someone away because they earn too much money.

I could now go on for a while about a few more things this brings to mind: first, whether we are, by giving medicine and healthcare away for free (but paying for it ourselves) are in fact making a firm stand about the universal necessity of free healthcare, or if we’re just buying into a system that we can’t see a way out of; second, whether, in the context of limited resources, if paying for a prescription of insulin, for example, should fall on the patient, if they are able to pay, or should always fall to the party better able to pay (in which case, it would almost always be the NGO); and finally, if it even makes sense to speak of the “context of limited resources” in a world where most infectious diseases and many chronic diseases would be easily managed by a relatively small redistribution of the world’s wealth—in which case, it might make more sense, then, to stop this “on the ground” work altogether and work only on the side of forcing or coercing a greater redistribution of resources.

But those are questions for another day. As always, I need to get back to the Sisyphean task of improving health, and making do with what we’ve got.