The democratization of opinion is the dominant social meme of the 21st Century. Driven by the power of the internet and social media, the opinion of everyman, thus aggregated, dominates decision-making like never before – in healthcare, as in almost every other sphere.
Jargon like “patient-centric development” and “putting the patient at the centre of everything we do” are now liberally sprinkled through pharma press releases. Developers, regulators and even payors are increasingly held in the thrall of the patient.
And who could possibly object? After all, making patients live happier, healthier lives is the sole raison d’etre for the pharmaceutical industry. A goal shared by healthcare providers, whether governments or insurance-funded private providers. Listening to the patient, then, must improve decision-making – right?
Wrong. Because patients come with biases too.
Just because the inherent bias of patients (in believing that the condition(s) they suffer from is underserved, and most deserving of any available additional resources to improve that situation) is both huge and entirely understandable, does not make it a useful component of the decision-making process.
The power of patient action groups in raising the profile of rare diseases in particular over the last decade has been impressive. Diseases where the patient groups have been most vocal have seen huge strides made in R&D, drug approvals and the continued willingness of governments and private payors to pay well over the odds to deliver these new medicines to those patients.
But other diseases, with ostensibly comparable health burdens on the sufferers, and as many or even more patients even in the US, have languished in comparison.
Worse still, as rare diseases are individually rare but together constitute a material fraction of the entire burden of ill-health, these “successes” are competing for resources with much more prevalent diseases. This competition is leading to cries of anguish over the prices that need to be charged to make discovery of new drugs for rare diseases viable at all. Forcing drug companies to sell their products, once discovered, for less may be a short-term solution but it will only dis-incentivise the industry from discovering any more drugs for minority conditions.
Reacting to the rising competition from vocal groups promoting certain rare diseases, the groups representing sufferers of much more prevalent conditions are getting their act together. Cancer groups, heart disease groups, Alzheimer’s Disease groups are all ramping up the volume.
But is that how we want society’s collective resources for healthcare research, development …
Creating new drugs is a process fraught with …
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