The NIH invests over $31.2* billion annually in medical research for the American people. NIH website
There’s something fishy with the way the medical system works. Take this simple fact; from 1996-1999 the FDA approved 157 new drugs. From 2006 to 2009, not long after the NIH’s budget had more than doubled..the FDA approved only 74 new drugs. What happened? Had the researchers ran out of insights? No. Were they butting up against insolvable problems? Not necessarily. In fact they were doing more and more insightful work all the time….and were spending much more money and had better tools than ever yet, but so far as the patient was concerned they were less productive than ever.
As a recent Newsweek article called “Desperately Seeking Cures” points out, the problem appears to be that the patients are not the main concern, anymore. It turns out that our medical research system, oddly enough, places a premium on rewarding intellectual endeavor. What about improving patients health? That’s a decidedly secondary goal. Somehow in the most sophisticated health system in the world, health ended up becoming secondary.
We, of all communities, should be able to see this very clearly. If the system targeted ‘need’; if it was primarily designed to improve the health of American’s then CFS would get an enormous amount of research funding. Similarly if it was designed to reduce the cost to society of disease we would get a lot of research funding. But finding the next big discovery in as ‘messy’ a disorder as CFS with its potential subsets, vague definition and multi-systemic problems is problematic. Far better to focus on an obscure genetic disorder that strikes tens of thousands of people and gets funding than a debilitating disorder that strikes a million people and doesn’t.
According to Newsweek the system rewards big theoretical discovery but provides little incentive -and several barriers – to turning that discovery into something useful. In this system the grunt workers that plow through 1,000’s of factors to find the one that actually works in a patient are given little respect or funding.
The NIH, for instance, will provide big money for researchers to explore their theories but won’t provide money for researchers to turn a discovery into a drug. They can also be a stumbling block with licensing, often demanding large upfront fees that little startup firms can’t afford. With big layoffs taking place in big Pharma over the past couple of years and with venture capital drying up biotech start up firms are having are having more and more difficulty getting the money to test their products.
This presents the decidedly unpleasant scenario of someone finding a cause for CFS and then lacking the money to produce a cure as well. If XMRV turns out to be the cause of ME/CFS the treatment for it may already be sitting on a drug firms shelves but if the problem in ME/CFS turns out to be something else; some obscure chemical in the brain or a molecule that regulates vascular functioning, there’s a good chance, given in the current climate, that the research would stop there; leaving researchers with at least some degree of intellectual fulfillment but the patients with nothing but frustration.
A Way Out? – With academia looking more and more ‘academic’ all the time, it’s private foundations, often led by patients, who are pushing the medical research community in new directions. The Michael J. Fox Foundation, for instance, requires that its researchers to work together and share data prior to publication and then turn that data into meaningful treatments as quickly as possible. In our own neck of the woods the WPI in its focus on ; translational research’ (from bench to bedside) and the CFIDS Associations with its collaborative Research Network are attempting to create similar dynamics.
The CAA’s Research Network with it’s BioBank, its Researcher WIKI, frequent conferences and the Associations often interlocking, intertwined studies make the traditional NIH grant funding process that rewards individual researchers, but not research networks, look positively inefficient and stodgy.
A New Paradigm For A Different Disease – It’s clear that CFS with its multi-systemic problems – just doesn’t fit well in the old mold of one research team working on one problem while another research team works on a different problem with the hopes that somewhere down the road that the two somehow will meet up. Diseases that affect the nervous/endocrine/immune systems (the NEID’s) such as ME/CFS cry out for collaboration and cross-boundary talking and thinking. They need research efforts that emulate the kind of cross-talk we see in the body, that share data in the same kind of integrated , back and forth fashion that the body does. This is a disease, after all, that may very well live in the connections between systems not in a breakdown in one system.
If the blood vessels in the gut affect blood flows in the brain which in turn affects mitochondrial functioning then the gut researchers need to be working with the brain researchers who, in turn, need to be working with the cellular energy researchers. This is the kind of program we need and this is the kind of research the Research Network is providing.
Hope For the Future – There is hope that Academia is waking up to its problems. The Health Reform Bill contained $500 million dollars designed to turn promising discoveries into drugs. Stanford University has been providing promising researchers both the know-how and funding to develop drugs. Interestingly the initial legwork to determine compound effectiveness can be done by small groups. The HHV6 Foundation has been investigating anti-herpesvirus compounds for several years and Dr. Chia reportedly continues to doggedly examine the effectiveness of compounds against enteroviruses in his lab.
How can we assist our researchers in climbing the walls that academia has built? Simply by supporting research efforts designed to translate findings into real treatments (and not simply academic kudo’s) , and in innovative research efforts that use the power of community to learn more and move faster. The really amazing thing is that parts of our little research community are fully engaged in this business of remolding how medical research is done. For that we should be thankful.