THE story of little Kaycee Bradshaw and her fight with Batten disease is one that has moved Star readers over the past year.

Many supported the Sutton family with fundraising to ensure Kaycee’s parents could be at her bedside at Great Ormond Street Hospital for treatment.

It is the family’s view that since Kaycee received the treatment her condition has shown some improvement and certainly stabilised. They say she has gone from no speech to being able to talk like a toddler.

So it is heartbreaking for them to learn that the National Institute of Clinical Excellence is proposing to withdraw the treatment – which the NHS has to pay more than £500,000 per year per patient – for children with the illness.

It is natural for any patient with a serious disease or a parent whose child is desperately ill to want the access to the medicines they need.

Inevitably, the focus falls on the NHS.

But should we look beyond that – and the costs the NHS are being charged by the pharmaceutical industry?

It was a point made by Dr Andrew Hill, senior research fellow in pharmacology and therapeutics at Liverpool University, in a national newspaper article in which he discussed the decision.

He says that the costs to manufacture drugs is often far less than what is charged to the NHS, underlining that pharmaceutical companies are profit-making organisations.

Surely this is a subject that needs wider debate and scrutiny as we consider how the NHS moves forward and deals with financial pressures, which is evident in the funding challenges faced by the St Helens Clinical Care Commissioning Group?

If a solution is not found expect increasing numbers of stories, where patients with increasingly complex illnesses make fundraising appeals for treatments outside of this country.

The question of how the NHS, which is in its 70th anniversary this year, can meet these rising costs is one of the biggest challenges facing modern society.

It is a question that successive governments continue to fail to deliver answers to.