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Excellence in Communications - Payers/Policymakers

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Winner

Dementia Strikes Children Too: Collaborative Campaigning for Access

by Portland for BioMarin


Summary of work

Dementia Strikes Children Too: Collaborative Campaigning for Access

CLN2 is an ultra-rare form of childhood dementia that robs infants of their ability to walk, talk and see – ultimately the disease is fatal. Our client, BioMarin, produces the only treatment in the world that can stop the progression of this devastating condition: Brineura. Together with BioMarin and a broad patient community, we created a multi-stakeholder campaign – Dementia Strikes Children Too – which targeted key payers and policymakers to support reimbursement of Brineura in the face of overwhelming odds.

In 2017, we kicked off by co-creating a public-facing campaign that would raise the profile of childhood dementia among the public and decision-makers and begin a collaborative fight for access. Over three years, we then delivered a sustained, targeted programme and led senior one to one engagement at the highest levels of Government.

Finally, after the medicine was rejected for a final time by NICE in February 2019, we redoubled campaign efforts in Parliament to scrutinise the decision. We succeeded in briefing the Prime Minister’s team and key MPs to schedule an adjournment debate in Parliament, all of which culminated in NICE reversing its decision and approving the drug in September 2019, the first time it had reversed HST guidance in its history.

Judges' comments

This highly creative campaign by Portland and Biomarin was a worthy, well-deserved winner. The co-creation of the project with the families and patient groups was a key element in the creativity. The campaign delivered tangible and sustained change for families with a smart strategy. It was a landmark achievement in terms of influencing NICE, done in a nuanced and diplomatic way. In this highly political area, this decision could have gone a number of ways, instead the end result worked for all parties. It did what it said on the tin!



Category Sponsors

Louise Dunn, Communications Consultant – Co-chair Communiqué Awards

Key dates

Entry deadline 11 March 2021
Extended entry deadline 18 March 2021
(additional fee applies)
Judging days May 2021
Awards Ceremony 1st September 2021

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