Excellence in Communications - Payers/Policy Makers

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Everolimus for Epilepsy

by Incisive Health for Tuberous Sclerosis Association

Summary of work

In July 2018, NHS England announced that it would not pay for a new treatment, everolimus, for epilepsy related to tuberous sclerosis complex (TSC), a rare genetic disease. The decision was hugely disappointing for patients and families, who made clear the life-changing benefits of the medicine.

The Tuberous Sclerosis Association (TSA) therefore undertook a multichannel campaign to reverse the decision. By engaging with NHS England on a constructive basis, mobilising the TSC patient community and provoking public scrutiny through the media and parliament, the TSA successfully persuaded the NHS to reconsider its decision and make everolimus available.

Judges’ comments

This nifty campaign focused on a small target group to get the best message across to the TSE community. They had solid tactics and attained good media coverage in a tough, rare disease market. What Incisive Health and the Tuberous Sclerosis Association achieved will change patients’ lives.