Article  Every disease is a policy failure

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https://worksinprogress.co/issue/future-of-medicine/

EXCERPTS: Medical innovation has transformed our lives, but hardly anyone realizes it. You can tell people that global life expectancy has doubled in a century and watch it fail to register – it just sounds like an abstract number, and numbers don’t convey how different life used to be. So let me describe it another way.

If you collapsed with a heart attack in 1950, hardly anyone around you would know how to help. CPR wouldn’t be invented for another decade. If you reached a hospital, a doctor would likely give you morphine, tell you to lie still and hope for the best: the prevailing view was that once the heart stopped pumping, nothing could be done. That changed in the 1970s...

[...] The statistics go like this. In 1950, the shortest-lived 1 percent of babies born in France lived less than three months. But for babies born after that, that 1 percent started surviving longer and longer: up to six months for those born in 1960, three years in 1970, 18 years in 1980, and 25 years in 1990. Alternatively, you can think about the cohort you went to school with. If you were born in France in 1900, only two thirds of your cohort would still be alive with you when you reached the age of sixty. But if you were born in 1960, 90 percent of them would.1 So here’s another way to think about the rise in life expectancy. It means that far fewer parents lose their children, fewer children lose their siblings, and we grow old with more of our friends and family still alive.

[...] There are almost certainly effective treatments in the pipeline today that won’t reach patients for years, sometimes decades, and it’s not because of the science. ... The deeper problem is that technology isn’t always the barrier: sometimes it’s about the funding, the incentives, and the institutions.

[...] It’s also become much slower and more complicated to run clinical trials. [...] The bureaucracy that surrounds trials today is largely a legacy of global regulatory guidelines introduced in the mid-1990s, which the trials industry interpreted defensively to minimize the risk of regulatory rejection.

Even when regulators have since rolled back specific requirements, companies have been slow to change. Around a third of trial costs, for example, come from the practice of ‘source data verification’, where a consultant manually cross-checks every data point collected at trial sites against paper records, despite the FDA recommending against it because it catches few errors while adding huge costs. Because less than 10 percent of drugs that enter clinical trials are approved and the costs of development are large, the industry has remained financially risk averse, doing far more administrative work than is required, and far less efficiently than the process could allow.

That doesn’t mean we should sidestep the process of rigorous testing. Clinical trials are the best way to test whether drugs are actually effective, how effective they are, and what side effects they carry. [...] It’s possible to speed up medical innovation without cutting corners or compromising on rigor, or better, through win-win solutions that improve both.

[...] The list of bottlenecks is long, and we need to move faster if we want to solve them before it’s too late for too many people. It takes years to find and recruit patients for clinical trials and clinical trial infrastructure is highly fragmented. Commercial incentives mean that firms have little desire to develop drugs for many diseases whose patients are too few or too poor for it to be profitable, and there’s little incentive to repurpose drugs for new uses once patents run out.

[...] I’ve been writing about global health and medical innovation for years, and when I tell friends and family how much progress there’s been, the reaction is almost always the same: they had no idea most of it was happening. But progress isn’t inevitable, and breakthroughs don’t just come about when we have the tools to make them; they depend on how innovation happens in the real world. Right now, those processes are bottlenecked by funding, institutions and incentives... (MORE - missing details)
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