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  1. ITV Report

NHS announces treatment for Batten disease will be available to patients this year

"The day we've been praying for has come... we can't stop crying".

It's a battle they say was worth every 'second, minute and hour' of campaigning for.

The Rich family from Newcastle have shared their elation on social media after the NHS announced life-prolonging drugs to treat Batten disease will become available on the NHS to patients this year.

In August, the family launched High Court legal action to overturn the decision not to recommend the funding of potentially life-saving treatment.

The Rich family shared the NHS England statement on social media.

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What is Batten disease?

Batten disease is a rare, fatal, inherited disorder of the nervous system that typically begins in childhood.

Those diagnosed with the neurodegenerative condition aren't expected to live past the age of eight to 12.

It is estimated that only 30 people in the UK have the disease. There is no known cure for the disease.

What are the symptoms of Batten Disease?

- Seizures

- Changes in personality and behaviour

- Dementia

- Speech and motor skills problems that get worse over time

How will the treatment help?

The treatment has proven to be extremely effective with it appearing to halt the degenerative effect of the disease in both of them. It is estimated the treatment could help people with Batten disease live for 60 years.

Nicole and Jessica Rich will benefit from the drug Credit: Family photo

Nicole and Jessica are currently receiving the treatment at Great Ormond Street Hospital in London.

A pharmaceutical company is currently covering the costs of the therapy as part of a 'compassionate use programme' and they go to London every other week for 'infusions'.

Prior to this, Gail and her husband Matthew were forced to separate every two weeks to take their girls to different hospitals in different countries for life-prolonging treatment.

The Rich family previously met with Health Secretary Matt Hancock during their campaign Credit: Family photo
  • Health Secretary Matt Hancock said:

I’m absolutely delighted this new treatment will be funded by the NHS, giving families dealing with the devastating impact of Batten disease renewed hope for a better quality of life for their child.

Through our Long Term Plan, we want all patients to have access to the most pioneering, value for money medicines - this is a great example of how we can work with industry to get treatments to patients as quickly as possible.

This can only be afforded thanks to the £33.9bn extra we are putting into the NHS, paid for thanks to our strong economy.

– Matt Hancock MP
  • Meindert Boysen, director of the Centre for Health Technology Evaluation at NICE, said:

This treatment shows great promise in slowing the progression of this devastating condition to allow children to enjoy normal childhood activities for longer which is so important.

“We are pleased to be able to make this early announcement, realising that families have been anxiously waiting for news, while we are carefully working through the details necessary to finalise the managed access agreement.

– NICE statement

Point of View is an ITV News series where we invite people to share their life experiences and what they've learned from them.

We shared Gail's story, about what it’s like having two daughters with a life-limiting illness.