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Zynteglo Advocates Accuse UK HTA Body Of Failing To 'Understand Patients' Lived Experience’

Bluebird Bio Announces Temporary Marketing Suspension

 
• By Francesca Bruce and Maureen Kenny

The UK Thalassaemia Society says that HTA body NICE fails to properly incorporate patient experiences into its decision making and that its patient engagement processes need reform. The marketing of Zynteglo, the gene therapy from bluebird bio for which the group is advocating, has just been temporarily suspended. 

Miscommunication , Tin Can Communications
Patients Can Sometimes Feel Unheard • Source: Shutterstock

Disappointed by draft guidance from NICE rejecting bluebird bio’s Zynteglo, the UK Thalassaemia Society (UKTS) has accused the health technology assessment body of misrepresenting patients and failing to understand the impact of the condition they live with.

“We feel disheartened that our patient experts were misquoted and used out of context and feel that NICE needs to rectify this,” said the society’s executive director Romaine Maharaj....

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