Batten disease is a very uncommon group of diseases related to the nervous system and its disorders. It causes seizures, visual impairment, and mobility loss. These disorders are usually first seen when a child is between 5 to 10 years of age and become fatal as time passes, usually when a kid reaches his late teens/twenties.
However, now after a long fight, parents have convinced the NHS to fund the treatment for this incurable disease. The NHS has agreed to fund the only drug that is said to slow the disease down. They say that every second of the fight was worth it.
The treatment for Batten disease costs a whopping £500,000 per child every year. However, a fairer price for the drug has been set by the drug manufacturer, Biomarin, for NHS England. This drug is called ‘cerliponase alfa’.
The difference this drug makes is “phenomenal”, as said by the parents of Nicole and Jessica Rich who are suffering from the disease. They have been using this drug and the parents claim that they hadn’t shown any further symptoms.
This betterment is the only reason why parents like Nicole’s fight for children suffering from such diseases. They say that every child deserves to have the chance of betterment. The parents say that they are pleased to see the progress but at the same time feel bad for children who were introduced to the drug too late.
The parents were overwhelmed by the response from NHS England. One of the parents took to Twitter to express their joy and said that this was the day they had all been waiting for. One of them said that her husband couldn’t stop crying after hearing the news.
Families have won permission to decide whether not funding the treatment was illegal in a judicial review. The NHS said in their statement that this was a major step towards helping children with rare conditions and their parents and give them hope for the futures of their children.
A lawyer said that children with Batten disease usually live up to 10 years. However, with this drug, they’ll be able to reach the age of 60.