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According to NICE, a fortnightly 300mg dose of Brineura costs £522,722 per patient, each year.
BDFA described it as a "groundbreaking" treatment that reduced patients' decline by 80%.

Patients have received the treated via a Managed Access Agreement (MAA) between NHS England and BioMarin since 2019, with data gathered thereafter to consider whether the treatment could be approved permanently.
The agreement, extended for six months last October, expires on 27 May, with NICE telling the ´óÏó´«Ã½ there are currently no arrangements to enable access to Brineura "as part of standard NHS care" after that date.
However, it adds the extension period is being used to try to secure a deal.
"Discussions between NICE, NHS England and BioMarin so far have been constructive, leading to the agreement of the six-month extension, and are continuing," it said.
NHS England confirmed data was being collected to determine whether the drug was "clinically and cost effective".
A BioMarin spokesperson said the drug played an important role as "the only approved treatment" for children with CLN2. 
"Our discussions with NICE and NHS England are ongoing, and we remain committed to enabling continued access to Brineura for children in England," they added.

Parents Phoebe Swaffield and Aimee Tilley mums to Florence and Isaac have been speaking to ´óÏó´«Ã½ CWR's Marian McNamee.