D2C - patients required

Dr Trevor Jones, director general of the ABPI, contends that patients have a right to information about prescription medicines direct from the industry, and not just a sanitised version from the government

The provision of information to patients about their prescription medicines was the subject of lengthy debate in the European Parliament towards the end of last year.

The debate itself followed proposals from the European Commission (EC) to allow pharmaceutical companies to provide information to those patients who requested it in only three diseases areas for a trial period.

This proposal was deeply flawed - and, quite rightly, the MEPs threw it out. It would have been discriminatory to limit the pilot studies to only three specific disease areas, namely asthma, diabetes and HIV/AIDS. What logic could there be in supplying some patients with the information they were seeking, and not others? What purpose would the trial period serve? What would happen at the end of it?

So now the EC must think again, and we await with interest its new proposals. At least it appears that this subject is now on the European agenda - and not before time.

At the heart of the debate is the right of patients in the 21st century to be able to access the information that they want, and the rights - or lack of them - of governments to prevent them from receiving it.

Informed patients can take better charge of their own healthcare. Through an informed dialogue with their GP, patients are more likely to take an active role in tackling their illness - not just with regard to medicines, but other aspects, such as lifestyle and dietary changes. This is acknowledged to lead to better patient understanding and better compliance with medication.

forbidden information

The demand for greater awareness and choice has manifested itself in several ways - not least the definitive growth in the number, organisation and effectiveness of patient organisations. Because they provide good quality information to patients, they require a full understanding of, and information about, the disease in which they specialise and its appropriate treatments. These benefits have already been recognised by the EU through its directive requiring patient information leaflets to be provided with every prescription medicine that is dispensed.

Until now, other than patient information leaflets, there has been no way in which manufacturers of prescription drugs could provide information to patients about their medication. Pharma companies spend an average of 10-12 years developing a new medicine, which gives them an unparalleled knowledge and experience that so many patients and carers would find invaluable. And yet it remains the only industry where manufacturers are forbidden from communicating with their individual customers.

It remains illegal to advertise, market or promote prescription-only medicines to the general public, although they can be marketed in a variety of ways - all strictly controlled - to healthcare professionals. Similarly, it is against the ABPI's Code of Practice for such advertising or marketing activity to take place. So in that respect, the European proposal was at least a step - albeit a small and wavering one - in the right direction.

Ensuring that patients and carers access accurate information is of real concern - particularly with the growth of the internet, which crosses international boundaries in an unprecedented manner. In effect, the internet means that patients or other interested parties can access information available in other countries, if not their own, regardless of current legal restrictions. Misinformation is often supplied by various parties while, ironically, the manufacturer is forbidden from engaging in dialogue with patients and carers. Pharmaceutical companies wish to provide accurate, balanced, scientifically based and ethically sound information about their medicines directly to the public.

Some opponents, deliberately or otherwise, confuse the provision of information with North American-style media and television product advertising campaigns. While these have proved their worth in their own environment, it is not a subject that is on the European agenda, and it side-tracks us from the real issues. It is surely absurd that, while internet sites giving information about medicines can be launched by anyone, regardless of their expertise and knowledge, the sources that know most about them - the pharmaceutical industry - are forbidden to pass their accumulated knowledge on to patients and carers.

better understanding

The few who oppose allowing the industry to communicate quality information suggest that such a move would lead to a large increase in the NHS medicines bill. It's true that, thanks to postcode prescribing, patients are not always offered appropriate treatments that are deemed 'too expensive'. Helping them find out about what is available, and how it can help them deal with their condition better, might cost more - but would be a price well worth paying. The NHS medicines bill will not soar. Patients who have a better understanding of their medicines and how they can help them are likely to work harder at making sure they work to their best advantage.

Yet the argument is not just about teaching patients how to take better charge of their condition. It is also about the rights of patients. As a major patients' association stated recently, it is impossible to understand the logic of a society that allows the advertising of foods and drinks, but finds it unacceptable even to tell people about the existence of rigorously tested medicines.

This form of censorship really is outdated and it is high time it was abolished. Is it acceptable that governments should vet what information the public should or should not read?

A further important point is the right of patients to be made adequately aware of the limitations of the medicines they are required to take. Companies should have the right in a regulated environment to provide patients and carers with the information they need and want - in the right format and at the right time. The logic is surely inescapable.