MP Marie Rimmer has urged health ministers to challenge drug companies charging "extortionate" fees for life-changing and life-saving drugs.

The St Helens South and Whiston MP today joined the call during a House of Commons debate into the lack of funding and high prices for drugs which can cause life-changing – and potentially life-preserving – drugs for two of her constituents.

Six-year-old Kaycee Bradshaw from Sutton has Battens Disease. Children with the condition rarely survive past the age of 12.

The disease causes patients to have seizures, muscle spasms, progressive dementia, visual impairment leading to blindness. It also results in the loss of speech and mobility.

St Helens Star:

Kaycee Bradshaw

Kaycee currently receives an enzyme replacement treatment called cerliponase alfa at Great Ormond Street hospital in London, which slows the effects of the incurable condition.

However, due to the cost of treatment being more than £500,000 per patient, the National Institute for Health and Care Excellence (NICE) has issued decision for the treatment to not be available on the NHS.

St Helens Star:

Liam with his mum Michelle

Another constituent is Liam Lowe, 19, from Sutton Manor who has PKU. This means he cannot process more than eight grams of protein a day or he would develop brain damage.

A form of treatment, Kuvan, is available in other countries but not on the NHS – which instead recommends a strict diet and medication.

Kuvan would see those living with PKU take a pill each day and allow them to have a "normal" diet without many restrictions.

However, due to the high cost of the drug it is not available.

Today Marie Rimmer raised both cases in Parliament.

She said: "I ask the Secretary of State, while working to secure the funding for the drug Brineura to help suffers of Batten’s Disease, such as my young constituent Kaycee Bradshaw.

"Will the minister also look to see how we can help prevent companies such as BioMarin from charging extortionate fees for life changing drugs.

"As sadly this company has also charges beyond the NICE framework for Kuvan a vital drug needed by my constituent young Liam, who suffers from PKU.

"Making a net-product revenue increase for 2018 of $1.3 million for Brineura and $26.1 million for Kuvan, with $1.5 billion from across their range of drugs. By my opinion a clear example of playing profits with people's lives and it hurts me even more that children are suffering this and it's not on.

St Helens Star:

Marie Rimmer speaking in Parliament

"It's time that governments got together and took it to heed. We don't know what these other countries are getting it for, they could be getting it cheaper than our £300,000 but something must happen, get together and put the pressure on.

"Please, please look to support these drugs for our children."

Seema Kennedy MP, The Parliamentary Under-Secretary for Health and Social Care, responded: "I pay tribute to Kaycee and Liam and I think the honourable lady makes a very important point.

"Of course we want pharmaceutical companies to develop their medicines here so they are first brought to the market here and its our constituents have access to them.

"But we also have an obligation to spend the tax-payers money in a fair way so every penny we spend can be spent rightly and appropriately

"When it comes to PKU and when it comes to Brineura what we are asking is and the NHSE is for the drugs companies that we will pay a price but we want it to be a fair one.

"Right honourable members have made it clear to me their concerns about the NICE process for rare diseases. A review is on going and I will keep a very close eye on it."