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.