A child who is seriously ill with a rare disease is likely to be denied treatment because of new cost-saving measures in the NHS.
Four year old Harley Bond has MPS3, also known as Sanfilippo.
It’s an ultra-rare, life-limiting disease that damages the brain and nervous system.
Harley’s dad Wayne told Socialist Worker, “There’s quite a lot of different trials going on for Harley’s condition around the world.
“We’re hoping something’s going to be successful.
“But it looks like if something is then we’re going to have a fight on our hands to try and get treatment for him.”
Harley is on a trial treatment programme for the currently incurable disease at Great Ormond Street children’s hospital in London.
But a new funding cap of £300,000 means that the NHS would be unlikely to pay for his treatment.
That’s even if the trial was successful.
Under the new rules introduced in March of this year, treatments costing between £100,000 and £300,000 are paid for based on a sliding scale.
The cost of the treatment is weighed against how much it can improve the quality and length of life.
Harley is one of fewer than 40 people in Britain who has the illness.
Children with the disease often live until their early teens.
As the illness progresses, Harley will lose the ability to walk, talk and go to the toilet.
But Harley is caught between a money-grabbing pharmaceutical industry and a NHS starved of funding by years of Tory cuts.
This means that getting treatment will be almost impossible (see below).
The National Institute for Clinical Excellence (Nice) draws up guidelines detailing what medical treatments and procedures can be used within the NHS.
In the same document that proposed bringing in the caps Nice pointed to the “significant financial challenges” the healthcare system faces.
Wayne said, “We can only assume that due to underfunding in the NHS these are the decisions they’re going to start making.”
But limiting treatments leaves vulnerable and seriously ill patients like Harley without the vital healthcare they need.
Harley’s parents, Wayne and Emma, are calling for the caps to be scrapped and for politicians to look again at how treatments are funded.
Wayne said, “We want them to overrule this decision and not have a cap.
“We feel that decisions like this shouldn’t just be made by businessmen sat behind a desk, but MPs should be involved.”
He added, “If you start putting money on people’s lives then we’re all screwed.”
Big drug companies often charge up to £500,000 a year for rare disease treatments.
Yet NHS rules introduced in March mean the NHS won’t pay for such treatments if they cost more than £300,000.
Wayne said it was wrong for pharmaceutical companies to charge so much for treatments.
“Usually when treatments like these come out they have a high cost due to low numbers. The pharmaceutical companies want to make as much money as they can,” he said.
“Pharmaceutical companies need to be realistic. They can’t just stick noughts on the end of figures and expect to get it.”
This situation is the result of the large monopolies that make astronomical profits at the cost of millions of lives.
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