Reuters Journalist Asks Why Chronic Fatigue Syndrome Is Ignored By June 12, 2014on
“Sometimes, unhelpful ideologies get in the way” Edward Hadas, an economic journalist, recently took on the question of why Chronic Fatigue Syndrome (ME/CFS) is funded so poorly in a Reuters piece “Market Failure Can Be A Sign of Fatigue” . He notes that while Chronic Fatigue Syndrome is a mystery to the medical establishment the bigger mystery is why a relatively common disease causing high rates of disability and economic losses to society gets almost no funding.
You have a glaring need, you have money spilling out of the system every year through lost productivity, and yet the medical ‘markets’ that would ordinarily respond to those needs, i.e. the drug manufacturers and medical research funders, have ignored it. “More crassly, this is a reasonably common disease that attacks many people in the prime of life.”
Hadas doesn’t get it. Any relatively common disorder that strikes people early in their lives is a potential gold mine for drug companies. Drug companies should be frothing at the mouth at the opportunity to lock up patients for decades with their expensive drugs. The research community should be responding to a relatively common and debilitating condition but neither are. Neither potential profits or societal effects appear to matter.
Treatments or vaccines for CFS are likely to turn out to cost less than the value of the labour that is currently lost to the disease. Contrast the societal benefits of drugs that could return a million or so patients to productivity for decades with the benefits of drugs that prolong the lives of cancer patients for a couple of months. No dollars are being devoted to the first type of drug, while hundreds of millions of dollars are being devoted to the second. Adam Smith’s ‘invisible hand’ of the markets is not working.
The fact that ME/CFS does not ordinarily kill people, the lack of a celebrity spokesperson, and (of course) conspiracies have all been proposed to explain this medical market failure, but Hadas suggests that ME/CFS’s big problem is that it doesn’t fit the one pathogen-one illness model of infectious disease.
The medical establishment knows that the old model of infection doesn’t work, but it hasn’t evolved the tools or the gumption to build a newer, more complex model. That really hurts because in the research-drug development tango research comes first. You can’t aim a drug at a disorder until you know what to aim it at; i.e. researchers need to elucidate the causes of ME/CFS before drug developers will produce drugs for it. Having ME/CFS stuck at the very bottom of NIH funding barrel for decades means few treatment options and little drug development. The federal funders have to do their part first – and they haven’t.
Hadas does not note one part of the market that has responded: the small private research foundations which may spend more on ME/CFS every year than the federal government. A ratio of private/public spending on disorders would probably highlight a variety of disorders for which the traditional ‘medical markets’ have failed. “The Failure of the Medical Markets in ME/CFS” would be a fascinating PhD dissertation.
The leading researchers do see the disease as a complex and multi-system failure. Their work could lead to a medical, intellectual and economic triumph. Hadas is hopeful that some members of medical establishment are finally taking note, and if they are given the funding he predicts their work will be ultimately be both a medical and economic triumph – not just for ME/CFS but for other debilitating diseases as well. Indeed, the fact that the economic failure of the market to provide for people with Chronic Fatigue Syndrome is being examined is a step forward. I believe Hadas’s proposal that ME/CFS reflects a new model of disease the medical establishment hasn’t caught up with is a good one, but one which is missing a few factors.
I suggest that ME/CFS is not alone, but is one of a group of disorders that have largely been ignored by the medical establishment. All are relative new (to medical research), are common, have high rates of disability, cause huge economic and medical costs (but not death), and are dominated by a group of patients – females – who have traditionally been poorly served by the medical establishment. They are disorders like ME/CFS and Fibromyalgia, irritable bowel syndrome, TMJ and interstitial cystitis. They constitute what may be the last great fight for equal rights/funding in the medical establishment for women.
Coming up shortly we address one of the most glaring failures of the medical markets – drug development – and push the FDA to do more.
Read more: Market Failure! Reuters Journalist Asks Why Chronic Fatigue Syndrome Is Ignored http://www.cortjohnson.org/blog/2014/06/12/market-failure-reuters-economic-journalist-takes-chronic-fatigue-syndrome-ignored/