BioMarin: Make Kuvan affordable to the NHS allowing people with PKU to lead healthy lives
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PKU is a rare health condition which is diagnosed at birth. People with PKU cannot process protein through the body properly and without treatment an amino acid called phenylalanine builds up in the brain causing brain damage. The only treatment funded by the NHS is an extremely restricted diet containing virtually no natural protein. The majority of the normal food that most people take for granted is off limits. People eat special medical foods and supplements. The diet is lifelong and people find it stressful and difficult to cope with it. If people eat the wrong thing they can suffer damage to their health.
There is a drug treatment called KUVAN which allows people with PKU to manage their condition safely whilst eating a normal diet. KUVAN has been available internationally for over 10 years. It is manufactured by the American company BioMarin who have already made significant profits from it. BioMarin has priced KUVAN at a level which the NHS has refused to pay. We are asking BioMarin to make a deal with the NHS. We have waited long enough - please let all the people in the UK who could benefit from this life changing drug finally enjoy a normal healthy life.
Barbara says - "My son Archie is 12. He finds it so hard to stick to the diet because it is so restricted. KUVAN could help him have a normal life."
Leanne - "I have two adorable twin baby girls with PKU. Its so hard worrying about every morsel of food they eat. Please make a deal to help them BioMarin!"
Adam is 19 and feels PKU is taking over his life. "I want help to be able to cope with this disease."
Kate says - "I am a busy mum of two and have very little time to myself. Its so hard managing my incredibly complicated and restricted PKU diet treatment but if I don’t keep up my health really suffers. BioMarin - please show your support for adults with PKU.
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