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Solidarity in Crowdfunding for Rare Disease Treatment

Baby Jayme was diagnosed with the rare muscle disease spinal muscular atrophy (SMA) type 1 in 2019, for which a gene therapy has been developed: Zolgensma.


Zolgensma is listed at approximately 2 million euros per treatment, making it the most expensive drug in the world thus far (Livingstone et al., 2021). Because it was not included in the Dutch basic health insurance package when Jayme was diagnosed, Jayme’s parents set up a crowdfunding campaign to access this gene therapy treatment. This campaign was spread by national television programmes and newspapers, with numerous interviews with Jayme’s relatives, as well as a famous singer writing a song about Jayme, appealing to people’s sense of solidarity throughout.


For my BSc thesis in Science & Innovation Management, I researched how solidarity is expressed in crowdfunding campaigns to access expensive treatments like Zolgensma (Houtepen and Ter Meulen, 2000a,b; Smolović et al., 2021). Interviews with a range of stakeholders highlighted the contrast between individualistic and collective solidarity.


Crowdfunding aims at an individualistic goal: it always concerns a specific case with personal needs. One of my respondents even described crowdfunding as selfish and anti-social. They saw individualistic solidarity as undermining the more collective solidarity engendered by charities and many national healthcare systems.


The primary principle underlying the Dutch healthcare system is indeed (collective) solidarity, but the fact remains that this system does not, and cannot, meet every need. This causes people to look for alternative solutions, of which crowdfunding is one example – by no means specific to the Dutch context.


Rather than selfish, crowdfunding may also be considered an alternative, additional outlet for citizens to express solidarity. Governments and others would do well to reflect on constructive ways to channel solidarity sentiments underlying crowdfunding to access expensive medicines.


We were saddened to hear Jayme died, aged 3, of the effects of SMA in June 2022, nearly two years after receiving treatment with Zolgensma in Hungary. We wish his family and friends much strength.

 

References


Houtepen, Rob, and Ter Meulen, Ruud (2000a). New Types of Solidarity in the European Welfare State. Health Care Analysis 8: 329-340.


Houtepen, R., and Ter Meulen, R. (2000b). The Expectation(s) of Solidarity: Matters of Justice, Responsibility and Identity in the Reconstruction of the Health Care System. Health Care Analysis 8: 355-376


Smolović Jones, S., Winchester, N., & Clarke, C. (2021). Feminist solidarity building as embodied agonism: An ethnographic account of a protest movement. Gender, Work &

Organization, 28(3), 917–934. https://doi.org/10.1111/gwao.12453


Livingstone, A., Servais, L., & Wilkinson, D. J. C. (2021). Crowdfunding for neuromuscular disease treatment: the ethical implications. The Lancet Neurology, 20(10), 788–789. https://doi.org/10.1016/s1474-4422(21)00266-0


Photo by Camylla Battani on Unsplash

 

Written by: Loes Reusen (BSc) and Tineke Kleinhout-Vliek (PhD)

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