A 21-YEAR-OLD university student with a rare condition has hit back at an NHS decision to make a life-changing drug only available to those under 18.

In February 2021, families across the nation affected by the phenylketonuria (PKU) which leaves sufferers unable to eat more than eight grams of protein per day, were told the NHS would only allow a life-changing drug, Kuvan, for under 18s.

PKU is caused by the deficiency of an enzyme called phenylalanine, the absence of which causes phenylalanine to accumulate in the blood, which can result in brain damage.

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

The recent decision will see people living with the condition being able to access the drug up until they turn 18.

This would see them take a pill each day and allow them to have a "normal" diet without many restrictions.

However those over 18, such as Liam Lowe from Sutton Manor, who has fought alongside The National Society of Phenylketonuria for the NHS and Kuvan supplier BioMarin to work together to find a solution to provide the drug, will now not have access to the treatment.

Yesterday, St Helens South and Whiston MP Marie Rimmer, quoted Liam while addressing the Westminster Hall debate on the Implementation of the UK Rare Diseases Framework.

Addressing the debate via video link, Marie said: "NICE’s decision to offer Kuvan to PKU patients up to the age of 18 is wrong.

"There is no miraculous cure for PKU sufferers when they turn 18.

"The transition to adulthood is a tough enough time already.

"18-year olds are moving away from school and often parental support.

"The disease requires excessive regulation of food intake.

"I have met with one of my constituents with PKU, Liam.

"The first thing that struck me was Liam’s mother bringing bags of special ingredients. Everything was homemade and all ingredients measured out so it was safe for Liam.

"Preparing the food was a full-time job. Liam has never had Kuvan as he is over 18.

"Liam is in his second year at university studying policing studies.

"He has planned and worked hard to contribute to society, but he fears without Kuvan this will not happen.

"There are hundreds like Liam who want to make a positive contribution.

"I asked Liam for his thoughts on the decision and I want to finish with what he told me

"Liam: 'The overwhelming feeling right now is one of betrayal. We have spent 12 years fighting for this drug, seeing it within our sights, our hopes finally rising at the prospect of receiving such a life changing drug, only to have it snatched from us.'"

"I am now asking Biomarin and our government to put people like Liam at the forefront of their decision-making.

"These people are being denied the quality of life that is possible and that they deserve."

Liam added: "Kuvan should be for everyone, not just the few who are below the age of 18.

"Something else to consider is the fact of how cruel it would be to take away Kuvan from someone receiving that treatment when they are young, and as soon as they’re classed as an ‘adult’ its taken away and they then have to struggle taking other medication which might not work as well and go through the process of restricting diet.

"This will be extremely hard for a PKU patient who has had a more relaxed lifestyle regarding taking Kuvan from childbirth and also manage the complexities of life at such an age where it will be very difficult to adjust to such a massive change in treatment.

"Whilst I appreciate such decisions have to be weighed against other probabilities and the fact there are other conditions out there that require funding and aid, I believe it is our time to have the option of Kuvan and expand our treatments further.

"It’s a chance for an often-forgotten community to feel they are visible and that someone does care for them.

"The powers that be need to find a solution for us, a solution that helps everyone and one that caters for all of the PKU community, not the few, and after 12 years, it is high time that decision was made with great urgency."