The past few months have been marked by a string of COVID-19 vaccine approvals, raising hopes that an end to the pandemic is within sight. We wanted to know how rare disease patients and their caregivers have been living through this historical moment.
Research in social and digital media platforms allows us to capture the experiences of rare disease patients in their own words. A strong message that comes across is that rare disease patients experience frustration and disappointment due to their absence from priority lists for vaccination against COVID-19. On the opposite end, the lucky few that gain access to vaccines take the opportunity to share their immense relief and post positive thoughts online to encourage fellow struggling rare disease patients who are still waiting for their turn.
The COVID-19 vaccine rollout has also brought to the surface the difficulties that rare disease patients have been going through for years. Patients do not hold back in expressing their disappointment in the governments’ response to facilitate the development of rare disease treatments. The speed of the COVID-19 vaccine rollout was directly linked to the fact that large parts of the population faced the fear of their health being put at risk, which prompted a collective institutional effort to respond quickly. Contrary to these efforts, rare disease patients feel neglected by their government officials and left behind.
Families and caregivers also face challenges when it comes to effectively protecting their loved ones while maintaining some necessary activity. By not being included in the priority list for vaccination, parents are being forced to choose between continuing their work or giving it up to prevent their high-risk loved ones from contracting the virus.
In an effort to address these hardships, patients, family members, and patient associations have reached out to governments to ask that all rare disease patients and their caregivers be included in the priority population for the rollout of approved COVID-19 vaccines. Associations are also being proactive by hosting webinars to diffuse relevant information that is otherwise hard to find.
Through social and digital media analysis, the pharmaceutical industry undoubtedly has a unique opportunity to learn about the struggles of rare disease patients and their caregivers in their own words. Drawing from this knowledge, pharmaceutical companies can take the lead and lobby for fast-tracking digital therapeutics and facilitating access to treatments. The pharmaceutical industry will pioneer in creating a community of engaged patients and stakeholders that will unitedly mobilise advancements in healthcare based on real, current needs.
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