From small indignities to tragedy: The daily realities of unaffordable medicines

This week I’m in Geneva at the 2015 Social Forum hosted by the UN Human Rights Council. The focus of this year’s event is access to medicines and the human right to health. If you follow me on Twitter or have read my blog, you’ll know that these are two of my favourite things.

And over the past few days I’ve been immersed in some fascinating debates. On how human rights relate to access to medicines, on the particular problems faced by women and children in accessing medicines, on how intellectual property may make new medicines unaffordable, and on the lessons that we can take away from the HIV/AIDS crisis.

Given all of that, it might seem strange that while sitting there I began to think back to when I was young and suffered from fairly acute asthma. Throughout primary school, year after year, I remember attending gym class and always finishing well behind my classmates in running just a mile. At the time it was a huge embarrassment to me and seemed like the end of the world (though it obviously wasn’t). And soon enough, because my family was well-off enough to afford the medicines I needed, it remained nothing more serious than a loss of playground pride.

I’d basically forgotten about all of that until 2010, when I moved from Washington, D.C. to New Delhi. During that first year living in India, I was constantly ill with some respiratory illness or another. Much of that I can now chalk up to New Delhi’s horrible air quality.

Regardless of the reason, often it was very serious, much more than finishing behind everyone in a race. I was constantly in and out of the doctors’ offices and pharmacies, paying for different services and medicines. I wasn’t making all that much money at the time and all of this began to take a toll. I ended up losing 20 pounds which, if you know me, left me looking skeletal. My hair greyed so much that I looked ten years older than I was.

So oddly, though I suffered with asthma as a child, it was as an adult that I got a peek into the daily reality of millions of families and children who feel the pressure of paying to see the doctor and paying for medicines out of their own pockets, albeit in a much more substantial way.

Ultimately I had the resources and support systems to make sure nothing worse happened. And even if something worse had happened, I could have left. But as I’ve written elsewhere, this isn’t an option for most people, nor should it have to come to that.

So coming back to today, to this event, I think it’s especially important to keep this in mind. That all of this talk on access to medicines and human rights in the abstract here in Geneva is all well and good, but that the things we discuss here are everyday lived realities for millions and that needs to be at the heart of the debate.

These realities might be as tragic a child dying from cancer because her family cannot afford a critical new medicine, but also might be an indignity as small as when a child has to stay inside while her friends are outside because her family can’t afford the medicines that she needs.

When we talk about human rights and access to medicines, we need to be sure to find solutions for each and every one of these problems by listening to the voices of people who live them.