Tuesday, June 23, 2015

Type 1 Diabetes care: affordability or technology?

We may hold very different opinions on the political and tax issues surrounding universal health care. But there's no doubt that, if you have Type 1 Diabetes, the way your local health care system works has a major impact on your life.

I have recently read Epic Measures: One Doctor, Seven Billion Patients, a (slightly hagiographic) book that chronicles the life, so far (he is not dead yet), of Dr Christopher Murray, the driving force behind the landmark Global Burden of Disease studies. The GBD is the main "product" of the Institute for Health Metrics and Evaluation (funded by the Bill and Melinda Gates Foundation). The GBD was considered so significant and groundbreaking that the highly respected "The Lancet" devoted a triple issue to its initial release in 2012.
The IHME has developed some fabulous visualization tools, accessible to all. 

But let's go back to Type 1 Diabetes... A data lover such as I could not resist the urge of toying a bit with diabetes related data. And, to some extent, what I found surprised me somewhat. A lot of the coolest diabetes technologies are developed in the USA, it is basically impossible to visit any English speaking forum or group on the Internet without being bombarded by JDRF press releases, walks, fundraisers, etc.. There seem to a be constant flow of money and bright minds towards US based projects...

But what does it mean in terms of public health? Our local health systems is definitely not flashy. We don't have "superstars" writing books or actively working on their PR. In many ways, we seem a bit backwards: CGM adoption, for example, remains low. However, because I have spent a few years in the system, I also know that the combination of affordable care, extremely strict regulations and highly trained doctors and nurses has advantages. Is that a bias? What can the IHME tell us?

Type 1 Diabetes: Belgian and USA mortality compared.

The chart is huge (you may want to roll your own versions on the IHME web site) but even at the small scale of this blog, some trends are clearly visible. Until the age of 9, mortality in both countries is extremely low and virtually identical. However, as soon as one crosses the 10 years mark, the death rates start to diverge significantly. At the 40 years old mark, we essentially are looking at two different worlds (in this chart, the cutoff is the maximum death rate in Belgium, in order to keep matching scales).

Here are the unadjusted charts for both countries.


Striking, isn't it?

Some differences could probably be attributed to the size of the county. In case of emergency, it should be easier to get to an hospital in Belgium than to be air-lifted from a remote part of West Virginia. Lets look at the data from a bigger country whose free health system is, thanks mostly to the Daily Mail, supposed to be an awful mess. You guessed it, I am talking about UK and its famous NHS.


Well, it seems to match (or even beat) the Belgian results. Beyond a certain age, your are up to 4 times less likely to die of direct diabetes complications in UK than in the US.


Canada seems to match the European rates until late middle age and then catches up with USA rates.
(I know very little about the Canadian health care system)


Are the numbers valid? Public health data is notoriously hard to interpret in some cases. However, I believe the data reflects the reality for the following reasons
  • its origin is IHME, an organization that has been recognized for finally delivering a reasonably accurate global view of the Global Burden of Disease.The methodology has been extensively documented.
  • the data matches other individual studies (possibly not a totally independent factor if those studies were among the sources used by IHME)
  • all the countries involved in this comparison have extremely high standard in terms of census, birth and death certificates, cause of death identification, reporting, etc...
  • none of the countries have any incentive to paint a better picture of their diabetes death and complication rates. In any case, the GBD looks at all death and disability factors. If a country wanted to embellish the picture of its diabetes death and complication rates, it would have to sacrifice another 'bin' and increase its mortality rate elsewhere. 
What do the number seem to indicate? Let's examine a few possible factors...
  1. technology impact: while I'd give the advantage to the US on that point - they always seem to be the first to develop and use cool gizmos - it certainly doesn't improve their stats. Or, if it does improve them, the starting situation is even bleaker than what we see here.
  2. fundraising, superstars: things like the JDRF walk, fundraiser for treatments, diabetes walk and other assimilated activities always leave me, as a European, in a state of mild puzzlement. The concept is a bit foreign to us: if we need something... well we simply walk, cycle or drive to the next hospital or doctor and get it. On top of that, we don't really have many doctors advertising their wonderful diabetes method and, since their books aren't translated in our 20+ languages, the average Joe doesn't benefit from their advice. Finally, while we do have our share of highly competent researchers, we don't really have flashy ones. There's probably less money available for research, possibly diminishing the incentive to act like a rock star. Still, all the goodies we are missing, do not seem to have a negative impact on our care. If their lack has a negative impact, it only means our results would be better.
  3. affordability of care: that's certainly a point where Europe (and to a lesser extent Canada) can't complain. The financial burden for the treatment of Type 1 Diabetes is either nil or extremely moderate. Our access to diabetologists, specialized nurses, psychologists, diabetes centers is essentially unlimited. In fact, one a kid has been diagnosed with T1D, avoiding care is actually more difficult than getting it: should you be the idiot who doesn't care about his kid, expect your diabetes center to worry and social services becoming involved... (things are of course not perfect: borrowing to buy a house, driving and insuring a car are still areas where T1Ds suffer discrimination). Could it be the reason behind the stats?
I can't find any other explanation... While I am a big technology lover,  while I am sometimes irritated by the total lack of interest of our diabetes team for new gizmos, I am forced to admit that, from a public health point of view, they are doing a good job.

As far as the USA is concerned, while I am a big supporter of the "a CGM for every diabetic" philosophy, I am not sure that a "CGM for seniors" plan is the best way to spend a limited amount of money. 

Making basic modern T1D care affordable to everyone everywhere without any hassle or meaningful financial burden is probably what would have the biggest public health impact.

Well, that's my opinion. But feel free to play with IHME GBD data and come up to another conclusion.

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