Science vs. Profit

Earlier this week, I was giving legal advice to an experienced recruiter for executive and technical placements. She has experience in the life sciences and inside knowledge of how sound lab work tested by competent clinical trials have helped people with various diseases. She knew about Duchenne but had no direct involvement with DMD.

The headhunter reaffirmed that the scientists and technicians in the labs with whom she is acquainted remain exceedingly committed to fighting the horrendous effects of rare diseases. Of course, I as a Duchenne constituent want more … a cure rather than mitigation.

 It was interesting that, without any prompting or editorial comments from me, the talent acquisition insider voluntarily offered that, yes, pharmaceutical companies play an important role although they do bring upon themselves a lot of earned criticism for overstated expectations of new product roll-outs and profit greed, time and time again.

The dedication to science and sometimes the idealism of researchers as contrasted against the profit motive of Big Pharma has been self-evident, at least in the U.S. and some advanced European countries for generations if not more than a century. It will not end, due to Human Nature, at least as long as autocratic governments keep their hands off human inventiveness and capitalism … which may or may not remain the case in our children’s lifetimes.

Operation Warp Speed led to COVID vaccines becoming available within an amazingly short period of time despite the uncertain scope and nature of the pandemic. The cause was flooded with public funding which, in turn, allowed Big Pharma to hit a home run with efficacious vaccines in exchange for a pot of gold in return.

Will Duchenne get that much prioritization? Probably not. There are more than enough dreadful rare diseases with catastrophic results to sap funding sources. Too much disease and too few dollars … even publicly-funded dollars.

So, how does our Duchenne community fight the good fight with respect to encouraging scientific knowledge to trump profit just enough to deliver a cure to Duchenne? Keep ringing the bell. Educate, even pester, political financial appropriators. Find political leaders and captains of capitalism who understand that they could make a very real difference towards a cure for Duchenne if they targeted research spend more wisely.

Meanwhile, we DMD families must continue fighting the good fight on a child by child basis which, in the end, may do far more good for the Duchenne afflicted than gobs of money. At least, let that be our prayer.

Kindly yours,

Papa in Franklin