Dudley MP Ian Austin is calling for price reductions for drugs needed by people with the illness Phenylketoria (PKU).
Austin has joined other MPs to call on pharmaceutical company Biomarin to urgently review prices for Kuvan after being contacted by people in Dudleu with the condition.
PKU is a rare metabolic disease which leaves people unable to metabolise protein properly within the body. This leads to a toxic build-up of phenylalanine which can cause irreversible brain damage.
Kuvan is the only medication currently available to treat the rare disorder. The alternative is a strict diet of extremely low protein – meaning almost all normal foods are off limits.
For many people with PKU, taking Kuvan considerably increases the amount of protein that they can eat each day while maintaining a safe phenylalanine level.
Last year, NHS England refused to commission Kuvan for patients living with PKU due to the significant cost of the medication, at £70,000 a year per patient.
Ian Austin says:
“When a constituent contacted me and asked me to support families in Dudley that are affected by PKU I’ve promised I’ll do everything I can to help - This is exactly how politics should work – it is my job to listen to local people and speak up for them in Parliament.
“It is a matter of public record that BioMarin has already generated substantial revenues from Kuvan. It is only right that patients are now put before profits, so this life-changing drug can be made affordable for use in the NHS.
“Kuvan could really change lives but that can only happen if BioMarin lowers the cost to the NHS so I’m calling on them to do the right thing and ensure people living with PKU can get the treatment they urgently need.”