Are relationships between charities and drug manufacturers always toxic?

A plea by cancer charities Breast Cancer Now and Prostate Cancer UK to make innovative treatments more widely available on the NHS is not a surprising headline.

Are relationships between charities and drug companies necessarily toxic? asks Roudie Shafie
Are relationships between charities and drug companies necessarily toxic? asks Roudie Shafie
After all, health charities and patient advocacy groups are here to demand better services, treatments and ultimately health outcomes.

Their case study is heartfelt: a plea by a young woman with breast cancer hoping for access to Kadcyla, the breast cancer drug causing a controversial ongoing battle over its cost between its manufacturer and the National Institute for Health and Care Excellence (NICE), the body that decides which drugs get reimbursed by the NHS and which do not.

Does this make charities and patient groups natural allies of pharmaceutical and healthcare companies in securing market access? 

Not necessarily. 

In the past, charities have asked Kadcyla manufacturers to drop the price, as well as demanding that NICE makes a better assessment. They have also lobbied the government to establish a cancer drug fund. 

None of these positions are mutually exclusive, but are they in danger of becoming less powerful? 

Last week the Scottish Herald broke a story that three patient groups advocating for access to a new leukaemia drug on the NHS had received funding from the new drug's manufacturer and other pharmaceutical companies. 

There are now calls to review the participation of these patient groups in the Scottish Medicines Consortium (SMC) decision-making process. 

There is no doubt that the interest of patient groups and drug manufacturers or other healthcare service providers can align, but are these partnerships now toxic? 

I have worked in the charity, public and private sector – in every sector, we now recognise the benefits of working with all stakeholders. 

Great alliances have come from many of these partnerships. Working for Boris Johnson during his tenure as Mayor of London, I lobbied the government for a £200m investment in a dedicated dementia research institute, which has since borne some fruit. 

The Treasury would simply not have heard our case if it had not been for the strong alliance across academia, the leading dementia medical research charities and patient advocacy groups and the pharmaceutical companies. 

When can these partnerships go wrong then? Basically, when they are not entered into in good faith. 

A medical charity or patient group is not a fig leaf and most are too savvy to allow themselves to be used in that way. 

Many groups will share your company or client's concerns and policy goals, or perhaps even benefit from hearing more about why they should care about your campaign. 

Few of these charities and patient groups have enough resources to take on new projects, so even funding agreements are legitimate. Transparency and independence is critical. 

Being upfront about any commercial partnerships in the way of sponsorships or other involvement does not disqualify a shared interest. 

Finally, always build a genuine joint position and a narrative for your partnership that can stand alone.
A worthy cause and human interest case study alone is unlikely to advance your campaign. You always need to be clear about what it is you are communicating and why.  
Roudie Shafie is senior consultant at Hume Brophy and former advisor to Boris Johnson

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