What can sociology teach us about the rare disease movement? « Rare Disease Blogs.

What can sociology teach us about the rare disease movement?
What are the key factors that could explain the rise of the rare disease movement and help us understand how to make it grow faster and more effectively?

the author
Nick Sireau
Dr Nicolas Sireau is Chairman of the AKU Society, a medical charity that works in partnership with the Royal Liverpool University Hospital to find a cure for AKU, an orphan disease affecting his two sons. He is a founding member of the international findAKUre coalition, which brings together leading research institutions, biotech companies and patient groups from across Europe and North America in order to find a cure to AKU. He is a former Director of GenSeq, a bioinformatics company. He is a fellow of the Ashoka Fellowship of Social Entrepreneurs and of the Royal Society of Arts. Dr Sireau’s previous career was in international development, where he set up SolarAid, an award-winning social enterprise bringing solar power to Africa, and wrote books on international aid.

A few years ago I finished my PhD in social movement studies, a sub-group of sociology that studies why social movements rise and fall. My PhD was on the 2005 Make Poverty History campaign, directly supported by more than 15 million people and 550 NGOs in the UK who were asking the G8 for major action to end global poverty. I then turned this into a book called ‘Make Poverty History: Political Communication in Action’ (Palgrave Macmillan 2009).

Based on this, let me explain how I think that social movement theory can be used to explain the rare disease movement, comparing in particular France, where it is highly active, and the UK, which is working hard to catch up.

There are four major schools of thought in social movement theory:
1. Resource mobilisation: this theory explains that the driving force behind the success or failure of a social movement is its access to resources (money, skills, people). For instance, the global poverty NGO movement in the UK is one of the strongest in the world in large part because it has managed to mobilise millions of pounds in funding from the public and professionalise its NGOs. Similarly, thanks to the impressive work of the AFM/Telethon, the Alliance des Maladies Rares and Orphanet, among others, the rare disease movement in France is surging ahead.

The rare disease movement in the UK, however, is still lagging. We’re fragmented, with no major fundraising campaign on the same scale as the Telethon. While Rare Diseases UK is a national alliance lobbying politically for a national plan on rare diseases, the UK doesn’t have an organisation devoted exclusively to helping rare disease patient groups in the same way that France does with the Alliance des Maladies Rares.

Hence, I would argue that a prerequisite for building a successful rare disease movement is to launch initiatives to gather significant resources and then to feed these into building the capacity of the patient advocacy sector. In effect, the UK needs its own Telethon.

2. Polical opportunities: a second major area of social movement studies is called political process theory. This is the study of how changes in political opportunities – such as governments favourable to a cause, politicians speaking out, new legislation, etc – create the conditions that allow further change. Again, France is way ahead. In the late 1990s, it was the French government that led the way in Europe for the adoption of orphan drug legislation in 2000. France is already onto its second national plan on rare diseases, which creates a strongly supportive environment for the rare disease movement there to flourish.

In the UK, meanwhile, we’re only just starting to move ahead on planning our first national plan on rare diseases. Although the NHS, through its national commissioning, is increasingly supportive of clinical care for rare diseases, there still isn’t enough awareness at the top political level. Even institutions such as the MRC are still lagging far behind their French counterparts. That’s why the work of lobbying groups such as Rare Diseases UK is so important in order to change the political landscape here and encourage the NHS, the MRC and others to do much more.

3. Interpretive frames: A third area of social movement studies is social psychology – how groups frame their interpretation of specific issues and how this then motivates them to action. An interpretive frame is a way of understanding the world. For instance, the French have a strong interpretive frame among the public around ‘orphan diseases’. Most people in France I speak to have heard of orphan drugs and know that people with orphan diseases suffer from isolation, marginalisation and problems with access to treatment – again, thanks to the massive educational work carried out by the Telethon and other French organisations.

The UK, meanwhile, has only a weak interpretive frame among the public. For instance, I did a presentation to 90 Cambridge students – some of the brightest young people in the UK – three weeks ago. I asked them if anyone knew what an orphan disease was. One person put her hand, and even then, she got it wrong.

Hence there is an urgent need to raise public awareness about rare diseases in countries such as the UK. We need to frame their understanding of it – through the media, through fundraising campaigns, through events – and move them to support us.

4. Collective identity: the fourth major strand of social movement studies analyses what it calls ‘new social movements’ that form around a collective identity (pacifism, anti-capitalism, etc). A feeling of collective identity binds a movement together: it creates a common way of seeing things, of taking action together, or feeling part of a community. Again, France is much stronger here: the rare disease movement is housed within a single building (the Plateforme des Maladies Rares), they have an annual ‘Marche des Maladies Rares’ and do common actions and fundraising.

This is just starting in the UK. Rare Disease Day on Monday will be an opportunity for the rare disease movement to get together at the House of Commons and start to shape a common identity. But we are still years behind the French. We need to work closer together, to bring together all the rare disease groups, and to take action in a concerted way.

What about industry in all this? I’m convinced it should play a crucial role. For a start, industry and patient groups need to realise that they share a common interpretive frame – about finding a cure for rare diseases – and are benefiting from similar political opportunities with national plans on rare diseases and orphan drug legislation.

But there are major differences in resources (companies making billions from orphan drugs while individual patient groups struggle to collect a few thousand pounds) and collective identity (the corporate world versus the non-profit world).

If we want our movement to make a major difference in the fight against rare diseases, industry will have to provide significantly more resources to patient groups than the crumbs it currently provides, but while strictly respecting patient groups’ independence and averting conflicts of interest that could undermine them.

Meanwhile, patient movements in countries such as the UK need to organise themselves much more effectively, reach out to the public with major educational and fundraising campaigns, and drive the policy agenda to a new level.
What can sociology teach us about the rare disease movement? « Rare Disease Blogs.