I'm on my way back from the dr. From one of the most inspiring events I have taken part in since I started dabbling in this world of diabetes advocacy. I want to tell you about the incredible people i met, about their hospitality and mutual respect, about how they gave of their time and of themselves when it would have been easy to give of their money and buy off their guilt. I want to also share with you the great food, Incredible experiences and exciting rides; and I intend to do all of this but I want to start with what seems important for me to say now, because this ain't the sort of stuff that can wait, it's about saving lives.
I think it's easy for us To forget the extent of the diabetes community and to indulge in a very limited perspective with regards to advocacy which allows us to ignore the real issues which become apparent with a global perspective. Whilst its wonderful, meaningful and life changing to empower diabetic people by giving them the ability to exercise and to change their life and improve their health I think this cannot come at the expense of a global perspective On diabetes community.
In the dr I met some of the happiest people I have ever come across. Some of them were better of than others both in physical and economic terms. But it pains me to see these people suffering from their diabetes, this need not be the case.
The people at Aprendiendo a Vivir are doing fantastic work in the dr, 25% of the people there have diabetes and many of them don't even know. Those that do know have to make the difficult choice between buying expensive basal / bolus insulin or using previous generation insulins such as nph and r.
The real issue isn't with insulin though; it's with education. Insulin is meaningless if I doesn't come with knowledge of how to use it. It's like driving in the dark with no headlights, the speed of your car is not the salient issue. Nobody can charge 50 dollars for 250 units of knowledge and thus it doesn't get funded and it doesn't happen. This is where aav comes in, they take young type one diabetics and educate them about their condition, about how to live with diabetes and not suffer from it.
Diabetes advocacy in the us doesn't talk about this, it certainly doesn't talk about the parts of Africa where post diagnosis life expectancy is less than 12 months. It doesn't say that untreated chronic disease is the genocide of the 21st century.
What diabetes advocacy does talk about is going on safari in Tanzania, while people there continue to go blind from a perfectly treatable condition. Diabetes advocacy talks about wearing blue on Fridays and lighting up buildings, we should be sure to inform the people who have one set of clothes and no electricity how much this increases "awareness". It's a pity they won't be around to see the results.
It's merely and accident of birth that i happened to be born in a country were I receive insulin for free and have had the luck to receive the education tools which let me keep my blood sugars in the healthy range which helps me avoid complications in the long term. I'm not really sure I did anything to deserve my diabetes, I'm not sure anyone did. I am really sure that nobody did anything to deserve where they were born, and they don't deserve to suffer for it. Artificial Insulin was invented as not patented 90 years ago, its a positive externality public good and people still don't have access to it, that's not right either.
The question is what to do about it, it's not an easy question to answer but I've some ideas. Firstly we can stop donating to organizations Which promote the nebulous concept of "awareness": I would love to know how a blue t shirt helps people who don't have access to affordable supplies. You can channel your help where it will really make a difference.
Support organizations who are working for education and building sustainable futures for diabetes. Not organizations supported by drug companies, there simply is not a profit incentive for them to move away from the status quo and these are for profit entities, if they bankroll an organization it isn't because they are all about saving lives. They might sincerely believe they are they might be trying to but they aren't. This requires system level change which doesn't occur under the impetus of those who do so well from the system that exists today.
We can't just parachute in supplies either. Turning up like some kind of blue wristband wearing Cecil Rhodes in Africa with a suitcase of strips isn't sustainable. It looks good and it helps some people for a short whole but all were really doing is propping up a system which is failing the people were claiming to help. We need to create and distribute low cost generic insulins, without strips and supplies to test. Basal bolus is meaningless, studies show better control with previous generation products which don't make profits for drug companies anyway but which are still being aggressively defended as intellectual property and thus being prevented from spin what they are supposed to do: saving and improving lives in order to ensure they can do what they now exist to do: generate profit.
We can also perceive a sense of community which we don't right now. Diabetes is a very individual condition. It needs us to be selfish sometimes but we need to be global as well. I have said this before but I share more with a type 1 in Somalia than my next door neighbor in San Diego, we need to exercise empathy and ask ourselves what we can do, and there are things we can do, because there but for the grace of god go all of us.
We can combine all of these things by giving of our time, and money to sustainable organizations like Ayuda. Not for profit drug companies like pharma futures and organizations which educate people like aav.
- Posted using BlogPress from my iPhone typed with my thumbs, and some very sore legs.