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Symbiotic relationship

Though it can be an uneasy marriage, pharma and patients need one another's support

A tropical fish hiding in some coralAccusations of impropriety around the relationship between big pharma and patients have become a frequent occurrence in today's media. While few would argue against the need for disclosure of funding sources of groups representing patients, or transparency of objectives in any joint ventures, complaints from some quarters increasingly suggest that there should be no relationship whatsoever and that any evidence of a link automatically means that patient groups are working 'on behalf of industry'.

Most patient groups would vehemently contest these accusations and counter that much of the financial support they receive from industry is used for vital and resource-heavy initiatives, such as manned patient helplines, maintenance of educational websites and paying (often skeleton) staff. Yet the perception that corporate involvement in patient initiatives, and funding in particular, is wrong per se appears to be gaining ground. Where does such thinking originate and is it justified?

It has not always been the case. For hundreds of years, apothecaries would prepare and sell drugs, sometimes dispensing them on a physician's orders, but often dealing directly with patients, suggesting what to take for which ailments and supplying therapies accordingly. This role of the apothecary as drug manufacturer who also advised patients continued to be an accepted approach until the end of the nineteenth century. Only relatively recently, since World War II, has the dominance of commercial drug manufacturers marked the demise of the apothecary and, concurrently, a radical change in the relationship between patients and those that make the drugs to treat them.

Behaviour questioned
In the 1960s, a series of high profile cases, most notably the thalidomide tragedy, prompted questions around the behaviour of pharmaceutical companies and their influence on prescribing physicians to the detriment of patient care. Largely as a result of this, the 1970s were marked by a raft of new legislation aimed at regulating pharma industry practices. A knock-on effect of this was to establish the industry in the popular mind as one which, left to its own devices, would not necessarily act in the best interests of patients. This was far from the image of an empathetic apothecary with the patient's best interests at heart.

The huge increase in the use of DTC advertising in the US in the 1980s gave rise to new accusations of 'undue influence' on consumer behaviour and 'disease mongering'. At the same time, the animal rights movement reached its zenith, exerting additional pressure on an industry struggling to adapt to a very new environment and increasingly characterised as a villain. Suddenly, the patient-pharma dynamic had become a polemic in its own right.

New relationship
In the last 20 years, as vastly improved communications and access to medical information via the internet have resulted in patients increasingly expert about their illnesses and available treatments, the pharma-patient relationship has undergone further radical change. Patients no longer recognise themselves as passive recipients of healthcare and drugs, but as active consumers exerting real choice and representing a potent politico-economic force.

This significant evolution has coincided with the availability of much better, but often more expensive, new medicines, putting the publicly funded European healthcare systems under increasing pressure to ration patient access. Seeking to transfer both responsibility and financial burden, governments have introduced pharma-targeted cost-containment measures which have, on occasions, also pitted the industry against the patient, but interestingly often left them on the same side. Of these, none has been so controversial as the inception of the UK's National Institute for Health and Clinical Excellence (NICE) in 1999. Against the background threat of NICE's refusal to accept the cost/clinical-effectiveness of new drugs, patient mobilisation accelerated and impressively effective and powerful advocacy programmes were launched. The Herceptin campaign in the UK is a case in point.

Recognising the power and influence of such groups, not to mention their shared objectives, pharmaceutical companies quickly began to form alliances with them against drug rationing. This dynamic is currently being replicated across Europe as Member States put in place their own health technology assessment systems. Increasingly sophisticated communications approaches and, latterly, the exponential rise of social media, have resulted in advocacy groups often punching far above their weight in terms of their influence on the national and international healthcare environment.

Of course, there have been high profile cases of compromised relationships, ranging from the risks associated with painkiller Vioxx, to the side effects of selective serotonin reuptake inhibitor (SSRI) antidepressants, to issues over access to vital medicines in developing markets. All parties have been forced to take a more mature approach to managing their relationships with one another and there is general acceptance that transparency is the sine qua non of joint enterprises.

Annemarie Bevers, board member of the International Diabetes Federation Europe and someone with diabetes herself, says: "I think that the relationship between pharmaceutical companies and patient groups has improved over the last few years. Not for all companies, but the beginning is there. Companies seem to be more interested in the opinion and experiences of patient groups, instead of being interested in how they can benefit."

The prevailing wisdom has been to rely principally on self-regulation in governing patient-pharma relations. In many markets, both parties already declare the partners with whom they work and the sums involved. Attempts to look to legislation to clear the air and provide a healthy environment for patient-manufacturer relations have been more limited in their success. Variations in national legislation remain widespread and significant. How legislation may, in the future, help the patient-pharma relationship, or whether new laws can only follow in the wake of practical precedent, remain points of discussion.

Perhaps it would be easier to sever the relationship between pharma and patients. Certainly many regulators, media spokespeople and, indeed, patient groups would welcome such a move. A recent report from the Corporate Europe Observatory seems to suggest that patient groups' acceptance of pharma industry support will always represent a conflict of interest.

But the reality is less clearly defined. Even those patient groups that would like to rely less on industry support find themselves struggling to source alternatives, especially in the current economic environment. Government funding or help in kind do not appear to be viable alternatives and may, in turn, raise issues of conflict of interest. If pharma were to pull out all together, patient groups and, more importantly, the individual patients they represent, would face some serious challenges. Of course, this might not be all bad as the resultant smarter working, more creative use of social media and an insistence on more diversified funding streams are all positives. But at the same time, the more expensive elements of many organisations' operations would be threatened, to the detriment of patient care. The smaller patient groups, such as those for orphan and other rare diseases, could face the hardest challenges.

A more sensible debate accepts that patients get their information and support from a wide range of sources, all of which have their own agendas and interests. Even the most august of institutions are not immune, as was shown by the trouble the World Health Organisation faced regarding the procurement of pandemic flu therapies. The truth is that it is a symbiotic relationship: pharma needs to relate to patients as much as it needs to sell drugs to receptive markets; in turn, patient groups need to maintain their relationships with pharma for funding and also because seeking knowledge of, and access to, the best available treatments is part of their remit.

Surely there is more than an element of paternalism in the view that patient groups are so blinded by their need for cash that they cannot see that they are being tricked into activity that they would not undertake normally?

A successful partnership leverages effectively the best resources of each partner. By applying unique expertise to healthcare challenges, patient-pharma partnerships can be hugely successful. Writing down transparent objectives and partnership parameters and agreeing on the intended outcomes are vital. Then, partnerships with patient groups can help pharma companies think in new ways, develop new approaches and gain access to new markets.

Equally, patient groups can learn from the systems and knowledge of pharma companies; the support they receive does not have to be limited to funding.

Annemarie Bevers comments: "Pharmaceutical companies could support patient groups in several ways. The first thing we always think about is money... on the other hand, patient groups could use the expertise of employees or departments of companies; for example, in communications, marketing, how to recruit new members, IT or many other areas."

Many pharma companies have now established dedicated advocacy units outside the normal marketing function that seek to work around shared objectives and remove the traditional commercial pressures from the equation. This has resulted in some of the best examples of pharma companies providing support in kind, helping groups build capacity and become more successful.

The danger in allowing the perception that any corporate involvement in patient initiatives is inherently bad is that a majority suffers for the sins of the few. The situation has evolved considerably since the 1970s. Every serious pharma company and patient group will not only respect the prevailing national and international legislation that binds it, but will often have even more stringent internal guidelines. There has been a move away from sole funding relationships in recent years and a justified backlash from patient groups at transient approaches by pharma related to product lifecycle.

Formal contracts between pharma and patient group partners are now standard. As Charles Gore, president of the World Hepatitis Alliance, points out, pharma companies "... need to understand that patient groups are the best advocates but that the success of that advocacy depends on credibility. Therefore they must always seek, not just not to undermine that credibility, but to actively enhance it."

Ideally, both sides should commit to work together to the highest ethical standards. If this can be achieved, then perhaps the benefits of such alliances will become more widely recognised. Charles Gore again: "Our best relationships have been characterised by shared aims, frequent contact and transparency. Typically, also they have involved projects where we have led, deciding on an objective and then approaching a group of competing companies for support, thereby avoiding any possible suggestion that the project is tied to any particular product."

Perhaps this model is the key to a happy marriage?

The Author
Claire Ashbridge-Thomlinson is partner and director, strategy and business development, at Fleishman-Hillard Healthcare

To comment on this article, email

10th August 2010


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