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One click at a time – a tale of the mighty pen and mouse

By and on September 2, 2016

Radhika Arora is an EV 2012 & ITM MPH alumnus.  

Esther Nakkazi is a freelance science and technology reporter, a blogger at Uganda ScieGirl and a media trainer. She has mentored African science journalists in the World Federation of Science Journalists project.  Follow her on twitter @Nakkazi. She is the 2016 Journalist in Residence Fellow at the Institute of Tropical Medicine in Antwerp, Belgium. 

 

It has been said before, and it appears to have been proven once again this week: social media can be used for the good, the bad and the ugly. In these times of increasing polarization and xenophobia, we’ve seen plenty of the latter (social media often seem to further increase polarization, rather than boost empathy for the downtrodden), but this week we saw some positive examples of the impact of sustained social media and mass campaigns. ‘Clicktivism’ is often ridiculed, but it remains a vital tool in the 21st century, especially if combined with mass media attention and grassroots action.

Social media, often used for crowdfunding can also be used to highlight social causes and advocate for issues.  It offers an opportunity for civil society, including consumers to engage with others and reach out to a wider audience, as well as, bring people together for a common cause. Sometimes it takes a while before social media commotion and campaigns have an impact, but eventually, in some cases, the resilience of committed citizens pays off (like on the issues of TTIP and tax optimization by Apple & co, where substantial “progress” was made this week!). In the US, the EpiPen story seems to be heading in the same direction. The (ongoing) EpiPen story could provide lessons relevant to the numerous ‘access to medicines’ battles that lie ahead in the coming years, in developing and in developed countries.

Over the last two months, social media campaigning and the resulting uproar held one big pharmaceutical company accountable to its consumers, for the price of the (now notorious) “EpiPen” – a drug used to tackle severe allergic reactions by Mylan Pharmaceuticals that has gone up by a handsome  450% since 2004. This week, Mylan Pharmaceuticals announced it will launch, and make available, a generic version of the drug within the next two weeks at approximately $300 (as compared to the branded product priced at $608). Still a hefty sum, but hey, it’s a start.

The cost of an EpiPen at $608 for a 2-pack today is prohibitive for many, including those with health insurance, but in an interesting turn of events, a petition against price gouging by actress Mellini Kantayya on Petition2Congress, early July,   gained momentum on social media and brought discussions on the prohibitive profit margins of pharmaceutical companies  into the mainstream (including in the media and, hitting the jackpot from a campaigner’s point of view, in the US presidential campaign, with the likes of Bernie Sanders and Hilary Clinton also taking a stance). In order to quell the negative attention or perhaps pacify outraged consumers, Mylan already announced coupon and patient assistant initiatives to lower out of pocket payment on EpiPen, and announced a generic version of the drug. Let’s hope more is in store.

Of course, campaigning for more ethical pricing by pharmaceutical companies isn’t new. Take the (now somewhat old) news of the case of Gleevec – a cancer drug by Novartis – for which a seven-year litigation (Novartis v. Union of India & Others ) was fought on whether the patent for the drug was valid or not. Over the last few years, activism by medical professionals in the US, highlight 5- to 10-fold increases in cancer medicines, and their impact on the outpatient expenditure. Doctors, researchers and others have called for better regulation of drug prices within the context of improved access to medicines and better health policies. Increasingly, access to medicines is becoming an issue in both developing and developed countries.

This particular petition was unique, though, in that it harnessed the tools offered by the internet and social media, and was largely led  by family members of those with life-threatening allergies, particularly parents, and not patient advocacy groups or larger organizations working in the area of access to medicine. The case is also interesting as the issues of affordability and ethics of drug pricing feature here within the context of a society (and consumers) from a high-income country, many with health insurance. Development of generic drugs is one of the ways, though not the only way, to improve access to medicines – but it certainly remains a key tool for those in low resource settings. One may also wonder why regulatory agencies and government would not engage in in the evaluation of pricing policies, based on the assessment of the real development costs.

The discussions on the pricing of EpiPen by Mylan in the media, and more so on social media, might have started in the US, but the platforms on which they were conducted indicate the role of these  tools to fight injustices all around the world, even for those living in low resource settings. With the Internet now available to almost all, including some of the poorest who can’t afford basic medicines and face daily injustices, the use of social media offers the possibility to have their voices heard. Still, while this blog echoes articles similar in their congratulatory examination of the role played by social media in this (early) victory, it would be unfair to ignore the other factors which might have led to Mylan introducing a generic version of the medicine, as well as offering other mechanisms to reduce the out of pocket costs on the EpiPen. For one, the cause was relatively easy to “sell” – the little children, the fact that it wasn’t just the poor who have to cough up the high cost of the EpiPen, and thus the ease of identifying with users might all have garnered greater empathy. We wonder if policymakers, civil society and the media would have been equally “emphatic” had it been an NGO or an activist organization advocating for ethical drug pricing and consumer rights, say, for the homeless.  Clearly, also, in many settings across the globe, social media are far less “free”, and the strategic use of social media for a cause, certainly in combination with grassroots action, is thus less obvious.

For the moment though, we’re happy for all the reasons which might have led to the rise of the issues of ethical pricing for medicines, monopolies by the medical sector, generic medicines and access to medicines into the mainstream discussion. At a time when ‘resilient health systems’ are favoured by key global health stakeholders, it’s perhaps good to keep in mind that another kind of resilience might be even more important – that of the voice of the people, as Owen Jones put it earlier this week in an eloquent Guardian op-ed on TTIP & Apple, people who are determined in their protest against injustice. Perhaps, electronic and internet platforms provide a more affordable and accessible mechanism for effective social mobilization, with all the caveats mentioned above.

 

Acknowledgment: The authors thank  Raffaella Ravinetto for her important inputs

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