Southend MP vows to help teenager access life-changing drug - BBC
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13 hours agoDebbie Tubby,at Parliament SquareandLewis Adams, EssexShaun Whitmore/BBCBrogan Johnson (centre) dropped an open letter off at 10 Downing Street with her sister and mother on TuesdayAn MP has vowed to help a 17-year-old who is fighting for a life-changing drug to be made available on the NHS. Brogan Johnson, from Leigh-on-Sea, Essex, cannot afford the medication that would slow her Friedrich's ataxia condition, which affects her heart, nervous system and mobility and is life-limiting. The drug, omaveloxolone, has been approved for private use in the UK, but costs about £1,000 a day. David Burton-Sampson, Labour MP for Southend West and Leigh, said it was a "really tragic" situation. Friedrich's ataxia is a progressive neurodegenerative disease that affects about 1,100 people in the UK and gives them an average life expectancy of 35-50 years. Omaveloxolone, which is branded as Skyclarys, was approved as a treatment for the condition in April 2025. However, discussions between pharmaceutical company Biogen and the National Institute for Health and Social Care (NICE) to get it on the NHS have stalled.
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