, 12 tweets, 11 min read Read on Twitter
I was recently asked 'how is the non-communicable disease #NCDs agenda going to ever get the same sort of money #HIVs did to achieve change?' I thought it was a very interesting question. Here are my thoughts, feel free to add/chime in/disagree #globalhealth #insulin4all 1/12
Everyone is trying to duplicate the #HIV movement without *actually* duplicating it. The sanitized history is that Bill Gates +Clinton + Bono got together and made HIV meds cheap. The real history is completely different cc @jamie_love @gregggonsalves theguardian.com/society/2016/j… 2/12
It was *patient* activism that turned the tide. It was groups like @actupny in the US or Treatment Action Campaign in South Africa, groups that could shut down the FDA or raise 10,000 people to march in Cape Town. It was not celebrity or academics 3/12
Yet the mainstream #NCDs 'players' don't really understand this. They may *hear* this but they don't *know* this. Witness the #HLM3 panel @UN in NYC where patient activists were locked in the room while heads of state / industry rambled on to themselves. 4/12
I've seen first hand, being a founding trustee of @t1international, and #T1D patient, outright disrespect of patient views in academic/humanitarian/ political forums. Patients deliberately excluded from meetings. Invitations *getting lost*, academics *too busy* to meet #NCDs 5/12
There is also the structural problems, like with classifying 100+ conditions under a header #NCDs, which no one outside this field understands. This has been well documented @richardhorton1 + others who have written extensively on this thelancet.com/journals/lance… 6/12
So getting back to the original question, how does the #NCDs movement get the money and results #HIV did? Here's my non-extensive list: 7/12 #NCDs
1. *Actually* duplicate the #HIV movement. This means patients at the very centre, controlling the agenda. It means getting political and getting theatrical. It means civil disobedience. It means a broad mass movement. It means partnership not co-option #insulin4all #NCDs 8/12
2. It means not treating all #NCDs the same, like w #diabetes; see the @WHO world health day that completely missed the mark in a world w/o #insulin4all (still bitter @t1international as we told their consultant this was inappropriate but they released anyway) 9/12
3. It means disengagement and skepticism of industry interests. Realize that they will do all they can to protect and grow their profit. We have groups like @Nestle, @novonordisk and @CocaCola openly setting the #NCDs agenda and hiring #NCDs experts. linkedin.com/jobs/view/1094…
4. It means beginning the debate with human rights based approach; not one based on academic studies, which often contradict each other or are poorly constructed. We refuse to live or die because of a cost-effectiveness argument #NCDs #T1D #insulin4all. 11/12
5. All of this will increase the power and relevance of the #NCDs movement, thus its attractiveness to donors.

If you like rights-based patient activism that is changing the world, follow @t1international, donate and buy some merch! t1international.com/t1i-shop/ #insulin4all 12/12
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