A Reality Check Is Needed

A Reality Check Is Needed

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I work in a field called ‘global health’. In theory, global health addresses large scale health problems affecting the globe. I am also someone living with type 1 diabetes. Increasingly, my frustration with the global health community’s near complete inaction on diabetes, especially on insulin access, has been gathering steam. On March 10th, in a hotel room in South Africa, it reached a boil.

That was because I was watching a live-streamed meeting of the United Nations Secretary-General’s High Level Panel on Access to Medicine (UNSG HLP) – a contender for most uninspiring title and acronym that has ever existed. UNSG HLP was holding public hearings on access to medicines in London UK at the Kingsway Hall Hotel. The hotel is described on Google as having “Upscale Rooms & Business Facilities”. The crowd was full of representatives from pharmaceutical companies and/or academia, mostly wearing business suits and nice dresses. They fit in well.

It was miles away, figuratively and literally, from where I sat in South Africa. However, not to be biased based on mere appearance, and having a few hours to kill, I watched. There was an option to submit questions through Twitter. So, throughout the broadcast, tweets like the following came from my account and the T1International twitter account:

How will the #LondonDialogue lead to improved access to insulin for people with #T1D in low income countries? #insulin4all #ourD #DOC

How will #LondonDialogue foster access worldwide 4 ppl w/ #diabetes who are dying without life-saving #insulin? #globalhealth #insulin4all

The response, which you can see here (London Dialogue – 4:17:20) was disheartening:

We’ve had one comment from the web as well about ‘How will the London Dialogue foster access worldwide to [people with] diabetes, for those dying from lack of life-saving insulin?’ Just a reminder of the patient need in all of this, to focus on… um we’ve got just a couple of minutes left maybe in this session before we move to the final one. Any other…um…remarks?”” – Moderator @AJack

Thanks very much… just to follow up on your last comment around outcomes, just last week in the Netherlands we had a meeting…” – WHO Attendee

A specific question asked and immediately ignored. Not worth addressing. Not much time left, you see. Other, more important, comments to follow up on than dedicate time to a disease now killing more people than measles, HIV, TB and malaria – all put together.

Worst of all, it was a World Health Organization attendee who switched the subject. One would think with diabetes as the 2016 World Health Day he would be eager to discuss what the WHO is doing to help. I suppose it was too much to assume they will be doing more than making absurd superhero comics like the one on the left.

If you can’t already see why these comics are inappropriate, have a read of these articles which demonstrate why it’s not as simple as telling someone to ‘take your medicines’ or ‘eat healthy’, especially when there are many factors preventing you from being able to do these things.

Hard to get medicines from a pharmacy experiencing stock outs

Impossible to eat healthy in the middle of a drought

Adding to the tragicomedy, the UNSG HP social media had been retweeting my questions. They did not retweet this one:

Disgusted question on #insulin4all was raised @UNSGAccessMeds #LondonDialogue and moderator @AJack lets audience completely ignore it #doc

If the UNSG HLP process does not lead to real change it will prove to be the worst form of window dressing. It is already worrying that we are seeing similar initiatives crop up in the WHO and UN Human Rights Council, for example. Aside from forming an endless stream of meeting groups or task forces, with little collaboration or coordination between them, where are the real outcomes?

If this panel on access to medicines doesn’t lead to cheaper medicines, more insulin available in rural African pharmacies, fewer people dying, it means the process will have been an expensive waste. If it does not change the reality on the ground it will have consumed time, money, energy and resources that could have been put to good use elsewhere.

At one point during the webcast, Jamie Love, billed by the Guardian as ‘Big Pharma’s Worst Nightmare’ asked a simple question: “If you have a system killing people for no reason at all, when do you admit it is broken?”

That’s a question I hope UNSG HLP, and all who read this article, are asking.