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Hayes in the House: South Holland MP focuses on spinal muscular atrophy




Casework - the problems and challenges with which my constituents seek my help - presents a wealth of information on a vast array of subjects.

It is an enormous privilege to learn more about so many matters that have a direct impact on the lives of my neighbours here in South Holland and the Deepings.

Each year, for the last 22 years, I have taken up thousands of individual cases on behalf of constituents - more than 100,000 during my time in Parliament!

Sir John Hayes MP
Sir John Hayes MP

In this spirit, when Tanya White contacted me about her daughter Rae's medical needs, I learned a great deal about spinal muscular atrophy (SMA) - a genetically inherited neuromuscular condition.

Tanya took the time to inform me about the difficulty some SMA patients were experiencing whilst trying to access a new treatment - Spinraza.

Following further research and consultation with advocacy groups and scientists, I was delighted to secure the final debate of the Parliamentary term, presenting, in the House of Commons, the case for fair, universal access for those battling this degenerative illness.

Sir John Hayes MP
Sir John Hayes MP

The promise of Spinraza and its potential benefits to those who suffer cannot be overstated.

Families of children who have received the drug often report noticeable, profound improvements from the very beginning of treatment.

Good health is not the purpose of our lives, but, through the years, we are often reminded of the fragility and vulnerability of the human body.

Sir John Hayes MP
Sir John Hayes MP

Perhaps Theresa May's primary achievement was continued support for our treasured National Health Service, pledging to increase the health budget by £394 million a week.

During last Thursday's debate, I took the opportunity to ask the Government Minister responding to commit to the creation of a specialist fund designed to enable pioneering treatment for those with rare diseases.

The estimated 7,000 rare diseases affect 3.5 million here in Britain, presenting for some overwhelming challenges. Dishearteningly, at the moment, 95 per cent of rare diseases have no licensed treatments available, so it must be right to invest further in so called 'orphan medicines' that offer hope to those that suffer and might provide cures.

Sir John Hayes MP
Sir John Hayes MP

Facing a genetic and incurable medical condition is bound to bring life-changing challenges, but the prospect of exciting research developments means continual progress is being made. A cure that now seems hard to imagine might one day become available.

Gene therapy, an experimental technique, may even allow doctors, instead of using drugs or surgery, to treat a disorder by inserting a healthy gene into a patient's cells.

Such remarkable medical progress brings hope, but it must also mean that every decision in Parliament should focus on those in the greatest need.

That's the way I approach my casework, as, mindful that there is no fairness to fate, my team and I try to help all kinds of people with all kinds of problems.

No one has a right to good fortune - new life is a miracle and good health a blessing. So, as the new Prime Minister and his Government go about their work, it must be their abiding mission to fight a war on want, a campaign against suffering, a crusade for those in pain. Nothing less will do.


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