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Some provocative points here.

A few years ago I was introduced to a businessman who had the misfortune to have been diagnosed with MS in his 20s. Friends often sent him information they’d found on MS, hoping it would be of use. This is how he found out about a research finding in myelin repair, which offered the promise of a good treatment –though not a cure– for MS.

As he followed up with the scientist involved in the discovery he was shocked to find out there was no particular plan to take this finding forward to provide a treatment for patients. As he dug in some more he found out that this was typical –not just limited to myelin repair or MS.

As a result of his experience he founded the Myelin Repair Foundation (www.myelinrepair.org), which is dedicated to “speeding the time it takes to discover, develop and deliver treatments to multiple sclerosis patients who simply can’t afford to wait.”

They’ve developed an accelerated research model, which is designed to address many of the issues you’ve raised. I think the model can be applied to many other situations, including cancer.

They are funded largely by individual donors (including me) and I encourage you to consider supporting them.

The real problem here is the gap in funding between Federal dollars and private funds (e.g., venture capital). I’ll explain: When a scientist at a University or non-profit research institute makes an invention with federal dollars, the institute owns the intellectual property with the requirement that they try to find a company to develop a product based on the invention. Unfortunately, many such inventions still need further work before any company will take the risk of investing resources to develop them into useful products or before venture capital firms will risk starting companies to do the work. Federal dollars are, for the most part, used to support only very basic science. This gap between federal support and private dollars is very real and very much where a lot of promising science stalls on the path to helping people. There are several different approaches being tried to bridge the gap and we all need to hope at least one is successful.

Also, I think that to imply that real breakthroughs are being deliberately concealed is a bit of a stretch. Anyone who discovers the cure for a disease will receive huge accolades as well as a continuous stream of funding for future work.

[…] commented earlier on how innovative models of collaboration among researchers are showing promise in accelerating drug discovery. The Myelin Repair […]

If you have not, you should read Don Tapscott’s “Wikinomics”. It is about mass collaboration. I think it goes directly to the point here.

[…] liked Nick Jacobs’ post this morning at the World Health Care Blog, in which he questions the academic research model as a […]

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