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Is our failure to invest in an Ebola cure ‘morally bankrupt’ or financially prudent?

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A breakthrough in an Ebola treatment might come from US government-funded research. Dr. Randal J. Schoepp under a Creative Commons Licence

If you contract a life-threatening disease you’d better hope it’s a common one. Or at least grisly enough to make newspaper headlines. Something dramatic that strikes quickly, rather than a slow burner. You also don’t want to be living in a poor country at the time – and the disease should affect plenty of wealthy Westerners, too.

That’s because, if you become infected with the wrong type of disease, you could well find yourself without medical treatment. Pharmaceutical companies are regularly accused of only being motivated to invest in diseases that are widespread enough to make it profitable.

‘They’re not social welfare agencies,’ says James Love, Director of Knowledge Ecology International. ‘They’re businesses out to make money. And that means essential research into many diseases is being neglected.’

Step up Professor John Ashton, who recently described Big Pharma’s refusal to invest in a cure for the Ebola virus as ‘moral bankruptcy’. And as the latest outbreak of this deadly disease spreads through West Africa at a rate that’s unnerving people across the globe, there’s a collective hope that something will be done to stop it.

However, consider that at the time of writing the current outbreak has killed just over 1,000 people. While any such deaths are tragic, it could be said that the investment of resources into a cure that could carry a price-tag of $1 million or more per person to turn a profit is, in purely financial terms, a ridiculous thing to do. With many pharmaceutical companies linking their moral accountability solely to their shareholders, for those who contract unprofitable, neglected diseases it’s often a case of ‘bad luck’ and in many cases, ‘goodbye’. But should it be so?

Dr Lorenzo Sopavioli of the World Health Organization (WHO) reports that more than a billion people – one seventh of the world’s population – suffer from one or more of the world’s neglected diseases. The WHO prioritizes 17 diseases which are found in 149 countries and can cause multiple infections that are ‘almost always associated with poverty’. Arguably, a medical model that does not allow for research into smaller-scale diseases is not helping a huge number of people who desperately need it, particularly in the poorest countries.

‘Pharmaceutical R&D [research and development] investment in new drugs and treatments is almost completely determined by potential profits,’ says Diarmaid McDonald, Advocacy Manager at the STOPAIDS consortium which has had many battles with the pharmaceutical industry over the years. ‘This has consequences right across the developing world’.

Despite the possibility of enticing PR opportunities for a company that does find a cure for Ebola, it will not come from private industry. Indeed, the small and relatively obscure Mapp Biopharmaceutical Inc behind the promising Ebola ‘secret serum’ is financially supported by the US government and the Public Health Agency of Canada.

Over the last decade, the US government and military have put tens of millions of dollars into Ebola research, partially as a counter-terrorism measure in response to fears the disease could be used as a bio-weapon. Without this rare funding, we’d arguably be even further from an effective treatment, thus highlighting the inefficiency of the current state of affairs.

‘Instead of sitting about and waiting for the Department of Defense in the United States or [for] Bill Gates, there needs to be some kind of a multilateral agreement where countries agree to finance R&D in these things that might just fall through the cracks,’ says James Love. ‘It’s too extensive for one country, but collectively, countries can all pitch in and make it happen’.

Clinical trials for the Ebola serum are far from completion, meaning its official release could be many years and millions of dollars away. For now, the treatment has been approved as ‘ethical for use’ by the WHO, and those infected would arguably be more than happy to take the risk when the alternative is death.

With big investment into rare diseases not forthcoming, many argue that investing in disease prevention is the most practical way forward.

‘Until more research is made into finding cures we really need to establish strong preventative measures to thwart these killer diseases,’ says Gareth Walker from the international health charity Doctors of the World. ‘For diseases like Ebola this ultimately means community health education on symptoms and precautions as well as strengthening health systems so they can stop the spread’.

In the longer term, rare diseases must get the attention they deserve through a funding system based on fairness rather than profit. One idea that’s been floated is allocating a proportion of gross national income from every country to healthcare R&D for the developing world, which would tackle both mainstream and neglected diseases.

To step up to such a challenge, ultimately, more responsibility must be taken by the public and private sectors alike.

‘It’s morally reprehensible that the current system is allowing people to die needlessly,’ says McDonald. ‘It’s the responsibility of both governments and businesses to structure any system so that it effectively delivers medicine that the world needs.’

Natalie Nezhati is a writer and lecturer currently working with the communications team at Doctors of the World UK, where this post originally appeared.

Have the public had enough of manipulative charity marketing?

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Jaded: charities need to stop relying on images that pull on heart strings. UNIFAM under a Creative Commons Licence

We’re all familiar with the adverts. You know the sad-eyed children, slowed-down pop ballads and sombre voice-overs informing us how nobody cares. Narratives carefully constructed by advertising agencies to make us feel wretched for not doing more to help. Stories of unimaginable suffering followed by a reassuringly-intoned directive that you – yes, you – can make it all better by reaching for your credit card. Save a life. Save this dog. Camera cut to wagging tail. Happy ending. Fade out. 

With so much uncertainty surrounding their funding, charities are feeling real pressure to secure donations but emotionally manipulative advertising strategies can cause more than just irritation. They risk saturating us with so much suffering that we end up tuning out completely. 

New research conducted jointly by the London School of Economics and Birkbeck finds that public perception of international aid agencies is becoming increasingly negative and that marketing overkill is part of the reason. The full report ‘Public knowledge, reactions and moral actions in response to humanitarian issues’ is published in September and will make for uncomfortable reading for many NGOs. While the research shows that charities consider themselves as trusted and valuable organizations, the public say they resent ‘excessively traumatic’ campaigns, complaining that ‘all they want is our money’.  

‘The public are tired of the continuous images of distress being dumped upon them,’ says Leigh Daynes, Executive director of Doctors of the World UK. ‘Charities need to stop presenting beneficiaries as hapless victims and make sure that people are engaged over the longer term.’ 

The research suggests that charities can also become victims of their own success as many now equate large organizations with faceless bureaucracy, greedy commercialism and a general lack of principles. ‘Branding,’ ‘benchmarking’ and ‘marketing budget’ are words most of us would prefer not to associate with a charity, even those which possess the commercial strength of a FTSE-listed company.

This could be why, although we remain generous in donating to one-off humanitarian causes such as earthquakes, many of us are unwilling to commit to ongoing support.

‘People are caring and still respond empathetically and sympathetically to distant suffering, but we’ve found a marked and widespread fatigue in response to humanitarian communications,’ says lead researcher Dr Bruna Seu.

As well as being jaded, people are often concerned that money is ending up in the wrong hands. We’ve all heard the stories of corruption, such as Panorama’s recent documentary ‘Where’s our aid money gone?’ from which we learnt of the purported bribes, kickbacks and document suppression linked to The Global Fund, the international aid financing organization that will receive over £1 billion (US$1.7 Billion) from British taxes by 2016. Then there was the Comic Relief scandal where it transpired that millions of pounds of donations had been invested in funds with shares in tobacco, alcohol and arms firms.

It’s not surprising the most recent survey conducted for the Charity Commission finds that people have serious concerns about both the way charities raise funds and how they spend their money.

It seems NGOs will have to work hard to re-earn public trust.

So how would the public prefer to be engaged? The research shows people want to hear facts so they can make their own decisions about where to donate. People naturally expect that they will feel sad when hearing about sad events but resent the continuous assailment by emotionally aggressive marketing.  Instead, they want to be seen as supporters rather than simply cash donors. They want to donate their time volunteering and attending events. They want more meaningful human communications.  

Charities must now focus on re-establishing these human relationships because their success depends upon partnerships based on a foundation of trust and reciprocal respect. 

‘Charities were formed by citizens seeking social justice and the highest regard for human rights and dignity,’ says Leigh Daynes. ‘This is one of the greatest lost narratives of our time.’

Natalie Nezhati is a freelance writer and English literature lecturer. She works with the Doctors of the World communications team in London.