Should the EU ban on patient access to prescription drug information be removed? asks Paul MacDonnell
Unlike the US, the EU bans patients from receiving information about prescription drugs directly from pharmaceutical companies.
A Lansdowne Market Research survey conducted last November suggests that most Irish people favour the US approach. There appear to be obvious commonsense reasons for the EU's position but there are, notwithstanding public opinion, aspects of how the ban works that should cause us to pause for thought.
Firstly, information about innovative treatments for a multitude of conditions, where self-management and patient empowerment is encouraged, have to pass through the bottleneck of the medical profession. Nothing wrong with that until you consider that, according to the experience of most European patients, the medical profession is indentured to state health providers. It does not and cannot call the shots on new more effective (and usually more expensive) treatments because its employers don't have the money. The result is that patients only know what doctors tell them and doctors can only prescribe what health budgets allow.
What appears to be an initiative to protect patients from over-use or misuse of prescription drugs (a very reasonable objective) may, in reality, be a tool for managing the expectations of customers in a market where the service, because it is invariably provided at below cost, is always rationed.
Modern medical practice encourages patients, particularly those suffering from chronic conditions requiring long-term use of prescription medicine, to understand their disease as much as possible. This view is shared by doctors, other health service professionals and, most of all, by patients themselves. So why aren't patients, who are encouraged to research their own conditions, allowed access to information from drug companies?
There is, of course, understandable concern about the prospect of patients directly purchasing and consuming prescription medicines without the approval of a doctor and consideration about how these drugs might work with other medication they're taking. But this is not what questioning the ban implies. The choice isn't between an unregulated, internet-driven Wild West medicine show and the status quo. The need for patient protection - under a regime that combines regulation and avenues for legal redress - from negligence or dishonesty on the part of drug companies is not in question.
In truth, the ban seems to enable EU governments to avoid facing up to some serious underlying problems confronting their public health systems.
The ban on patients finding out for themselves about new, and possibly more effective, treatments may have a noble objective of patient protection. But could it be that governments aren't so much concerned about what's in new drugs as terrified that their health budgets can't afford them? Could the ban on information be nothing more than a tactic to support a wider strategy of prescribing cheaper generic drugs to keep costs down. Undoubtedly, the move towards generics is an honest attempt by Europe's healthcare providers to obtain value for money in established treatments. In essence it is, in most cases, the best they can afford.
In 2001 the European Commission responded to appeals from more than a dozen European patient groups for a relaxation of the rules, by proposing an amendment to the 1992 ruling, that would have allowed patients suffering from HIV/Aids, asthma and diabetes to obtain information directly from pharmaceutical companies. Despite the fact that these are all conditions where self-management underpinned by an understanding of the condition by the patient is critical, the European Parliament rejected the suggestion.
What do Europeans themselves think? The November survey of attitudes in Ireland commissioned by the Freedom Institute, an Irish think-tank and conducted by Lansdowne Market Research, is revealing.
The survey suggests that 61 per cent of Irish adults believe that all information about medicines should be available to the public. Some 57 per cent believe their doctor does not tell them about other possible treatments when prescribing medicine. Less than a quarter support the current ban on information being made available directly to consumers.
Those Europeans with access to the internet are slowly undermining the regime. However, the poor or the elderly contain disproportionately high numbers of people with conditions that require self-management and, hence, what EU policymakers like to call patient empowerment. However, these are precisely the parts of our community where the internet is less affordable or understood.
Another aspect that should give us pause for thought is the effect on the European pharmaceutical industry itself. Faced with a situation where its customers are mainly states looking for the cheapest and not patients looking for the best, it is already losing its innovative edge to the Americans.
It would be wrong to deny the challenges that EU governments face in the provision and funding of healthcare but surely they should realise that, whatever their future approach, an open market in ideas and patient information is bound to be part of the solution and not part of the problem.
Unless the EU acts, its citizens will increasingly take matters into their own hands. The Freedom Institute survey found that it is younger people who most desire open access to information and who are most likely to use the internet to get it for themselves. Patient empowerment means patients having the information they need to manage, where possible, their own condition. In the meantime for many of the poor and the elderly, the State is deploying strong economic interests against their empowerment. Is it time for patients to be given a right to information?
Paul MacDonnell is a director of the Open Republic Institute, an Irish public policy organisation.
pmacdonnell@openrepublic.org