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 and treatment to be distributed? Should those who shout loudest (or hire the most effective PR firm) jump to the head of the queue?
Most ‘non-patients’ (that is, the ‘healthy’) would probably prefer to see resources dedicated according to some kind of formula that took account of both the burden of the disease on the individual and the number of people who are affected by it. In other words, eliminating the biases that exist (whether as a result of ‘patient-activism’ or from historical inequalities of care). It is just as compassionate and caring to listen to the data as it is to listen to the heart-rending individual case stories from patients. Arguably more so – since that compassion is shared equally among the deserving, irrespective of their means to tell their story to the public.
But patient groups do much more than argue the case for more public resources to be allocated to their cause. They also raise money to supplement those resources, and make things happen that would not otherwise have happened. Take, for example, the partnership between the CF Foundation and Vertex that has led to the approval and launch of Kalydeco™ and a pipeline of other mutation-specific CFTR structure correctors. Would that have happened without the CF Foundation contribution?
Likely it would not. And within the isolated objectives of CF sufferers, it has been a resounding (though hard-fought) success.
Yet here too patient groups’ fund-raising is drawing on a fixed pot of cash available for charitable donation. Once again, there is competition – and that competition is being biased by packaging as much as by the content of the argument.
Take for example, the patient groups campaigning for greater resources for prostate cancer care. The underlying thrust of their argument seems to be that lots of money is spent on breast cancer (predominantly among women), so why should prostate cancer in men not receive the same funding? Effectively they are leveraging a gender war to persuade men to donate to support men.
But is there any rationale to support such a proposition?
On the face of it, breast and prostate cancer are equally common (209,000 versus 218,000 new cases per year), and responsible for a similar number of deaths (40,000 versus 32,000). But the real difference lies in the age at death (on average 68 years old for breast cancer suffers, after an average age at diagnosis of 61 years, compared to 80 years old for prostate cancer suffers diagnosed, on average at 66 years old). The number of years of life lost to breast cancer is therefore substantially greater than for prostate cancer.
And these numbers do not even allow for the expected improvements to come from the most recently approved prostate cancer medicines, such as the anti-androgens Xtandi™ and Zytiga™ which promise to dramatically improve outcomes even further.
An unbiased observer, faced with these numbers, might reasonably conclude that compared to almost every other major cancer type, prostate cancer is already well served, and that available resources should be preferentially diverted to, for example, breast cancer. That is different to the impression deliberately spun by the prostate cancer patient groups.
Rightly, we do not tolerate biased marketing of pharmaceuticals – with regulators exerting draconian control over the information companies can distribute about their products, whether over social media, the internet or through more conventional channels.
Perhaps understandably, we seem rather more tolerant of the biases expressed by patient action groups. Yet today, they underpin significant distortions of the resource allocation model for healthcare. Perhaps the time has come to recognize that patient groups have an axe to grind, like every other interested party, including pharmaceutical companies. They do not hold a monopoly on the truth, nor exclusively occupy the higher moral ground. Instead, we should listen to their point of view, cognizant of their inherent bias and imposed spin.
Unarguably, patients have an important contribution to make when it comes to selecting approvable end-points. The industry needs to listen to the voices of those who suffer a particular disease to better understand the symptoms that have the greatest impact on their quality of life – and companies and regulators alike need to innovate to deliver drugs that deal with these symptoms.
Similarly, the patient networks and registries that have emerged simplifying clinical trials has also played an important role in speeding drug development particularly among the rarest of rare diseases.
Of course, like all such trends the importance of patient action groups will eventually fade. Once every possible cause has an equally well-oiled media machine, the impact of any individual special interest declines back to baseline. Making the case for one equally valid cause over another only works until everyone is playing the same game.
But the foreseeable future, while the social media playing field is most definitely uneven, lets all keep in mind the biases that pollute patient opinion. Doing so does not signal a lack of compassion, but rather an over-riding sense of fairness.
This article by DrugBaron was original published by Forbes, and can be found here
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