On the eve of the FDA hearings, Silja Chouquet has delivered an eloquent, passionate and well-reasoned plea in support of a raft of measures proposed by the EFPIA in the name of improving patient access to information.
Pharma should be as concerned, if not more concerned, about the lack of health information available to patients and the consequent poor health decisions and non-compliance issues arising from it as it is with its adverse event obsession. It should also take the time to consider the correlation between them.
Patients and patient communities are the ultimate arbiters of the pharma industry’s reputation, not regulatory bodies. Pharma would do well to hear their voices, take account of their needs, and set about finding ways of serving them.
By way of an example, how much more effective the EFPIA’s demonstration of its commitment to transparent self-regulation would be were it to bind itself to a concurrent pledge to meeting the EU commission’s recommendation that it provide better health information to patients.
These are some of the thoughts I have shared on the subject over the last couple of days:
Let’s hope that the FDA hearing is more than a rhetorical gesture, and that real work gets done in Washington that will be in the ultimate interest of American patients. As a counterpoint, however, it is worth noting that many patient advocates feel that their having been denied the opportunity to participate in a debate that is ultimately supposed to be serving their needs takes value away from the event before it has even begun:
Let us simultaneously express our fervent hope that we in Europe avoid heading down a long road to a dead end.