• About
  • Contact
Saturday, July 5, 2025
No Result
View All Result
Londoner News
  • Home
  • London
  • Britain
  • Europe
  • America
  • International
  • Submit Article
  • Other
    • Health
    • Tech
    • Travel
    • Science
  • Home
  • London
  • Britain
  • Europe
  • America
  • International
  • Submit Article
  • Other
    • Health
    • Tech
    • Travel
    • Science
No Result
View All Result
Londoner News
No Result
View All Result
Home Health

Batten disease treatment: Parents win battle ahead of court date

by The Editor
September 11, 2019
in Health
0
Batten disease treatment: Parents win battle ahead of court date
0
SHARES
2
VIEWS
Share on FacebookShare on Twitter

Families of children with a rare degenerative disease have won their fight for funding for treatment.

The four children, from Newcastle and Cheshire, have Batten disease, which is incurable and causes seizures, visual impairment and mobility loss.

Their parents had been refused funding for an expensive drug which they say slows the disease down.

But NHS England has now confirmed that a "deal had been struck" to fund the "life-changing" treatment.

The National Institute for Health and Care Excellence (NICE) had previously said it could not be certain it was value for money. The treatment costs £500,000 per child per year.

But NHS England said manufacturer Biomarin had agreed a "fairer price" for the drug, which is called cerliponase alfa.

'Flexible and realistic'

Earlier this year the families won permission for a judicial review to decide whether the decision not to fund treatment is legal. The hearing was scheduled for next month.

A NHS statement said: "This is another concrete step towards ensuring NHS patients with rare conditions get access to important new treatments.

"Coming after extended negotiations, the new deal reached today is a reminder that in order to succeed companies must be flexible and realistic."

Seven-year-old Nicole Rich and her sister Jessica, three, from Throckley, receive the drug through a scheme funded by an America pharmaceutical firm.

TheRead More – Source

The Editor

Next Post
Assisted dying campaign video accused of ‘scaremongering’

Assisted dying campaign video accused of ‘scaremongering’

Recommended

Parkinson’s results beyond researchers’ wildest dreams

Parkinson’s results beyond researchers’ wildest dreams

6 years ago
Coronavirus: Fertility treatments to start again in UK

Coronavirus: Fertility treatments to start again in UK

5 years ago

Popular News

    Connect with us

    About Us

    We bring you the best Premium WordPress Themes that perfect for news, magazine, personal blog, etc. Check our landing page for details.

    Category

    • America
    • Britain
    • Entertainment
    • Europe
    • Health
    • International
    • latest news
    • London
    • Markets
    • Science
    • Tech
    • Travel
    • Uncategorized
    • Women

    Site Links

    • Log in
    • Entries feed
    • Comments feed
    • WordPress.org
    • About
    • Contact

    © 2020 londonernews

    No Result
    View All Result
    • Home
    • Science
    • Travel
    • Tech
    • Health

    © 2020 londonernews