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Engage the tussle

Disease awareness campaigns have increased over the last decade in response to patient demand for information. Are they essential for patient empowerment or are they merely techniques to boost sales?

featureThe Health Select Committee will soon report on its inquiry into the influence of the pharmaceutical industry over prescribers. Some of the most widely discussed areas of the inquiry were disease awareness campaigns and the industry's relationships with patient groups and the media.

Disease awareness campaigns have increased over the last decade in response to patient demand for information. National newspapers carry several health stories a day and there are 84 newspapers and magazines which focus almost exclusively on health for consumers. Millions of people around the world search for health information on the internet.

Who is meeting this huge need for health information? It is supplied in the main by governments, the World Health Organisation (WHO), pharmaceutical companies, patient groups, medical publishers and unlicensed traders making money by marketing treatments for conditions such as erectile dysfunction and weight loss. Of these information providers, pharma companies are the most heavily regulated, especially in Europe.

The drivers of this demand for more information are many. Patients have been kept in the dark for years by a profession for whom knowledge meant power and sharing knowledge meant diluting that power. A more inquisitive public is no longer willing to accept the information they receive un-questioningly and most people would say that was a good thing.

People have also woken up to the fact that health outcomes are better in most other western countries, and certainly in the US, than they are in the UK. There is also a suspicion that information about superior (and more costly) treatment is withheld, or certainly not promoted, as the NHS cannot afford to pay for such treatments for everyone who would benefit.

Many criticisms of the pharmaceutical industry's role in the education of patients were voiced by witnesses to the HSC. At one end of the scale, it was accused of inventing diseases, or 'disease-mongering'. This criticism is easy to counter, but to dwell on this misses the point that other, less absurd criticisms, are potentially more damaging.

The main challenge laid down by the HSC's inquiry is that the industry seeks to increase sales by expanding the criteria through which patients become eligible for treatment for a specified condition. When HSC members visited Australia, they were informed that one company had defined as 'needing treatment for incontinence' those people who need to urinate more than a certain number of times in the day and night. Members of the HSC agreed with doctors that the frequency of micturation defined by the company in question actually fell within what most people would consider to be a normal range.

Cause for concern
A less convincing criticism of the industry's disease awareness campaigns came from various witnesses whose opposition is based on the grounds that they make people anxious. The HSC chairman, David Hinchcliffe, asked a doctor whether people were presenting to you and your colleagues assuming there is something wrong with them as a consequence of what has been termed `disease-mongering' by certain people in the industry.

This question drew an enthusiastic response from Dr Iona Heath, a GP member of the Council of the Royal College of GPs. Absolutely - I see women worrying about osteoporosis every day of my working life. I see people inappropriately worried about cholesterol every day of my working life. We are including an ever greater proportion of the population within a group who consider themselves to have some sort of health problem.

Dr Heath's view is common among doctors who believe that the NHS is there to treat sick people, and that the time and resources are simply not available to deal with the worried well. The trouble is that some of these people will have an elevated cholesterol level which some day might lead to a heart attack. It is thanks to industry-funded disease awareness campaigns that people are now aware that
they should check their cholesterol level.

How can you be inappropriately worried about it? Plus, cholesterol is easy enough to measure - you are concerned your level might be high so you go and ask for a test. If it is high you go on a diet and/or a statin and if your level is normal, you don't. No further cause for concern.

Lifestyle changes
The industry is resented even more for the treatments it markets for so-called 'lifestyle' conditions. Professor Healey stated: We may all have been happily impotent until quite recently, but we have problems with our impotence these days because Viagra persuades us that being impotent is not the kind of thing you should be - you should be having Viagra.

I think it is safe to say that, except in the case of those who are celibate from choice, no-one is 'happily impotent'. Pfizer has worked responsibly, as has GSK and Lilly, to make people aware of the fact that medical solutions are now available. No-one is forced on to treatment as a result of that awareness but many couples now have a choice that did not exist before, and they are no longer dependent on doctors for that information.

Dr Richard Taylor, an independent member of the HSC, sought comments on the suggestion that some drug firms are guilty of having a drug and actually looking for an extra illness for it to work on.

Some major breakthroughs, like AZT for HIV/AIDS and indeed Viagra for impotence, arose as research was directed on to new areas of activity from the original indication for which the drug was licensed. Dr Taylor went on to ask whether any companies were trying to 'popularise' an illness among people so that one of their drugs became more widely used.

This is an important area for debate. Some of the disease awareness campaigns appear to the outsider as if they are trying to make certain diseases 'popular', whereas they are actually trying to raise awareness of conditions that are usually sub-optimally treated. Sometimes these are ticking timebomb illnesses that may not cause immediate problems for patients but will in the future if not managed properly (e.g. hypertension and Type II diabetes), while sometimes the illnesses are just treated poorly with patients taking old, or inappropriate, medication, as are so many with mental health problems and epilepsy.

Right to speak?
Yet, critics argue, should it be the industry with its vested interests that communicates this information to the public? Several of the witnesses to the HSC were highly critical of the industry and its motivations, but having read all of the transcripts of the hearings I came across very few critics who were able to specify examples of how the motivations they criticised so much had harmed public health.

Much was made of how the flood of money from industry drowned out the educational efforts that try to promote alternatives to drug intervention where appropriate, and how companies encourage doctors to prescribe a pill for every ill.

These criticisms overlook the fact that the UK is about the most conservative market in Europe. Dr John Patterson,executive VP of product strategy licensing and business development at AstraZeneca, drew the HSC's attention to the fact that it takes longer for doctors in the UK to take on board and start using a new drug than it does in any other European market, except Croatia.

The problem in the UK is under-treatment rather than over-treatment, if you take an objective view of prescribing data. Industry communication is well regulated, though there was some scepticism among HSC members about the effectiveness of self-regulation.

This was not helped by statements like: Again the regulatory environment - despite the ABPI Code of Practice - is such that while they are fine words they have absolutely no teeth whatsoever, made by Dr Richard Horton, editor of the Lancet.

I believe that Dr Horton's claim is completely untrue and I doubt he has any personal experience of whether companies take the Code of Practice seriously or not. I was glad to have been there to put the HSC right on this, as I know first-hand just how seriously a breach of the Code of Practice is taken by our clients.

Independent providers
If information provision was to be undertaken exclusively by independent organisations, as industry critics such as the Consumers' Association argue it should, we would end up with the government controlling the agenda. Patient organisations do not have the financial resources, nor in many cases do they have the expertise, to really influence people's health behaviour. If they are not going to get funding from companies, where are they going to get it from?

Having served on the board of an NHS Trust, I know how small scale and 'amateurish' so much of what is disseminated to patients by the NHS actually is, whether it's done with or without the support of patient organisations.

Worse than the lack of expertise in communication is the fact that the government and the NHS also have an agenda, which is usually to restrict access to medicines on the grounds of cost, or to avoid challenging the inertia that exists among too many doctors - 'we have prescribed this old toxic stuff ever since we were at medical school so we won't be looking at anything new thank you'. 

Fair for all
The best way to force change and improvement is to arm the patients with the information they need about their condition including any new treatments that might be available.

Serious health inequalities persist, for example, between different postcodes, between younger people and the elderly, between men and women, between the mentally ill and physically ill, between different socio-economic groups, between those who suffer from conditions where government targets abound and those who suffer conditions where there is less scrutiny and publicity.

It is essential that a plurality of sources of information continue for patients, professionals and the public. Indeed, it is a pity that Roche can't advertise Herceptin, for treating breast cancer, direct to the public in Derbyshire where, according to the independent think tank, 'Doctors for Reform', only 5 per cent of women with breast cancer who are eligible for treatment with Herceptin actually receive it - compared with 90 per cent of the same population in Dorset.

There are many groups committed to ending these inequalities but it will take time. Pharmaceutical companies are more regulated and restricted in what they can communicate than any other stakeholder. It is right that they should be heavily regulated in what they say about diseases and their own medicines but to restrict them further would leave the government, as the majority voice in healthcare, with the under-resourced voluntary sector struggling against the odds to make its voice heard.

We should learn from the last 20 years. The reason Britain has such poor health outcomes in most disease areas compared with the US and much of Europe is partly that it does not spend as much of its GDP on healthcare, but it's also because it tolerates an inertia in the system that delays the benefits that modern scientific knowledge and medicines can bring.

We should embrace the fact that industry has 'an interest' in securing better knowledge about diseases and improved access to treatment, and leverage that interest in the battle to overcome health inequalities and improve health outcomes.

The Author
Margot James is European president of Ogilvy Healthworld, an international healthcare marketing communications company.

2nd September 2008

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