A recent paper in the journal BMC Medicine examines the growing use of social media to demand access to investigational drugs with life-saving potential. According to the authors, desperate caregivers are relying on social media campaigns and online petitions because they lack reliable information on early access programs.
While absolute numbers of petitions are somewhat low, statistics suggest a dramatic increase in their use in recent years, and usage is expected to rise further. For just one website, change.com, the number of online petitions for compassionate use increased from three in 2009 to 20 in 2013. Families dealing with cancer and rare diseases made the vast majority of online appeals during that timeframe.
We understand the impulse to turn to social media because we spend time with patients and families who live with severe diseases. We know that parents will explore every approach and exhaust every option to change the course of a disease that threatens their child’s health and life.
In the BMC Medicine study, most social media campaigns did not result in early access to treatment. The outcome reveals an important opportunity to help families navigate obstacles to patient access, including fragmented policies of government agencies and individual states. Families can also learn about efforts underway to reform expanded access, including provisions in the U.S. 21st Century Cures Act.
Communicating clearly and with empathy can reduce frustration and minimize confusion. That’s why we work with industry, patient organizations and advocates to share reliable information about compassionate use. By taking the simple steps outlined below, industry can help families make informed decisions:
- Publishing criteria for expanded access programs online
- Disclosing anticipated response times
- Providing simple instructions for patients and healthcare providers
- Posting FAQs that provide patients with quick access to information
To learn more about our approach, please drop us a note or give us a call.
 Mackey TK, Schoenfeld VJ. Going “social” to access experimental and potentially life-saving treatment: an assessment of the policy and online patient advocacy environment for expanded access. BMC Medicine 2016;14(1):17.