Funding Needed for Drug to Treat Rare Condition PKU

I have called on the HSE to provide funding for a drug which treats sufferers of the rare condition Phenylketonuria (PKU).

PKU is caused by a defect in the gene that creates the enzyme needed to break down the amino acid phenylalanine (PHE), which is found mostly in foods that contain protein. If untreated through dietary or medicinal methods, it can have devastating consequences leading to brain damage and complete mental degeneration over a number of years.

Kuvan is a drug used to treat those with the condition PKU.

One in three Irish people carry the PKU gene. If they meet a partner who also has the gene, there is a one in four chance that their children will suffer from the condition.

The rate of those suffering from PKU in Ireland is almost double that in the UK. Currently in the UK, pregnant women with PKU are immediately put on the drug Kuvan, as a matter of urgency and priority.

However, the drug is not available for pregnant women, or anyone else for that matter, here in Ireland yet. Although the drug is not suitable for everyone with PKU, it could prove life changing for a substantial number of those suffering with PKU in Ireland today.

There are also cases of people living abroad who have become dependent on Kuvan – but who cannot return home due to the fact it is unavailable here. This is simply unacceptable.

It is my understanding that the HSE is currently considering funding this drug and I am strongly urging them to give the green light to fund this life-changing medicine which will alleviate the hugely restrictive dietary restraints that many PKU sufferers must comply with.

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