Cooperation and competition
Competition has its place in survival. It arises when more than one organism seeks scarce resources. Sometimes it requires mutation over generations to acquire a survival advantage, like a longer beak, or thicker coat.
Cooperation is a means for a group to increase its survival potential by joining strengths to gather resources and protect the community.
Competition enriches a few individuals but weakens the MPN community by dividing strengths, duplicating efforts and engendering waste of time, energy, and economic resources.
An easy example: After Incyte’s successful development and testing of ruxolitinib, Gilead, Sanofi, and CTI competed in a fruitless effort to develop a lookalike drug. Here’s what we lost as a community: MPN patient lives and thousands of healthy patient years plus hundreds of millions of dollars, and brainpower, creative scientific and lab exploration for a cure.
Within the MPN patient community, from the very beginning, the split of email patient support groups (LINK) divided patients into hostile camps, each declaring loyalty to one or another competitive leader. To this day, each maintain separate silos of information, private events, unsharing common medical resources.
Last summer, in response to the financial stress of a friend’s upcoming stem cell transplant, a dozen patients got together on Facebook, Skype and email to work up support. That was the MPN Community Fund, a project that morphed into the core of the MPN Community Support Network (www.mpnsupport.org). Together we published a list of resources available to MPN patients for everything from financial aid and travel to legal aid and government contacts, linking to existing lists and resources available on the Internet.
That was an on-going cooperative effort that built over the months. Deployed on its own stand-along website to encourage the widest possible participation, MPN Community Support was designed to make common resources available to all MPN patient without gain to any individual or organization.
A week ago I ran across a well-designed but pale clone of that list being floated by a company as a special resource on its own pages. It was clearly designed as a traffic builder for a private website.
That’s a competitive action to acquire a scare resource — MPN patient attention — and channel it into a private pool
Where is the additional survival benefit to the MPN community? Would it not be more productive to add strength to strength, and make the existing support portal more complete, more compelling, better known?