Health watchdog approves first ever treatment for progressive form of MS as charity hails ‘landmark’ U-turn by NICE following pressure from a 21,000-strong petition
- Ocrelizumab is the first ever drug to effectively treat primary progressive MS
- Last year NHS rationing watchdog NICE said £9,600 price tag was too steep
- MS Society spent seven months campaigning and putting pressure on officials
- NICE dramatically U-turned and drug will now be available on NHS in England
A breakthrough multiple sclerosis drug will be available on the NHS after officials reversed their previous decision to reject it.
NHS rationing watchdog NICE turned down ocrelizumab last September, sparking fury among campaigners and a 21,000-strong petition.
It is the first ever drug to be shown to treat primary progressive MS – a form of the condition which affects around 15,000 people in Britain.
NICE said the £9,600 price tag for each six-monthly dose – £19,200 per patient per year – was too expensive for the benefits it provides.
The MS Society launched a campaign putting pressure on the watchdog, NHS England and manufacturer Roche to find a deal to make the drug available on the NHS.
Eight months later a deal between the three parties has been struck and ocrelizumab will be made available on the NHS in England.
Zoe Bowman, 43, from Crystal Palace, was diagnosed with primary progressive form of MS in 2017. She said the new drug gives her a ‘glimmer of hope for the future’
Genevieve Edwards, director of external affairs at the MS Society, said: ‘This is a landmark moment and an incredible victory for the more than 21,000 of us who helped overturn this result.
‘We now want to see everyone who could benefit from ocrelizumab being able to access it, with increased support for MS services to make sure this happens.
‘Right now however there isn’t enough evidence to show ocrelizumab can work for everyone, and we know the restrictions will be a massive blow for those who still don’t have any options.
‘We’re driving research to find more and better treatments, and calling for drug trials to more fully address the needs of everyone with MS, until the day we are able to stop it in its tracks.’
MS is the most common disabling neurological condition, affecting around 100,000 people in the UK. Around 650 each year are diagnosed with the primary progressive form.
Ocrelizumab is the first and only treatment that can slow disability progression in this type of MS, where symptoms gradually worsen over time.
Ocrelizumab, which was tested in hospitals across the UK in a huge clinical trial four years ago, saw the progress of the disease slowed by 24 per cent over just 12 weeks.
Experts believe it delays the need for a wheelchair by an average of seven years.
Ocrelizumab is the first ever drug to be shown to effectively treat primary progressive MS. It’ll now be available on the NHS after a 21,000-strong petition put pressure on health officials (file photo)
It is licensed for early primary progressive MS, which is defined by how long someone has lived with MS symptoms, their level of disability, and MRI scans showing inflammatory activity.
MS, which affects twice as many women as men, causes loss of mobility, sight problems, tiredness and excruciating pain.
The disease either become progressively worse with age or strikes in brutal, periodic relapses – with many people left relying on wheelchairs.
The condition is caused when the body’s immune system malfunctions, and instead of warding off diseases turns instead to attack the body’s own nerves.
Certain immune cells, called B-cells, attack myelin, the protective sheath surrounding nerve fibres.
The ocrelizumab treatment slows down this process by stopping the B-cells from attacking the myelin.
The drug, taken as an intravenous drip every six months, has already been approved by 65 other countries around the world, with more than 50,000 people having been treated globally.
Zoe Bowman and Vikki Langford are sisters who were diagnosed with MS within weeks of each other.
Ms Bowman, 43, from Crystal Palace, south London, was diagnosed with MS in December 2016.
Ms Bowman’s sister Vikki Langford (pictured), 52, has relapsing remitting MS. She said the news ‘sends a message that people with primary progressive MS matter and they equally deserve treatments and care’
Ms Langford (pictured with her daughter Chloe and sister Zoe) said it was ‘awful’ knowing she had a world of treatment choices at her fingertips, yet her sister had none
HOW DOES THE DRUG WORK?
MS, which affects twice as many women as men, causes loss of mobility, sight problems, tiredness and excruciating pain.
The disease either become progressively worse with age or strikes in brutal, periodic relapses – with many people left relying on wheelchairs.
The condition is caused when the body’s immune system malfunctions, and instead of warding off diseases turns instead to attack the body’s own nerves.
Certain immune cells, called B-cells, attack myelin, the protective sheath surrounding nerve fibres.
The ocrelizumab treatment slows down this process by stopping the B-cells from attacking the myelin.
The drug, taken as an intravenous drip every six months, has already been approved by 65 other countries around the world, with more than 50,000 people having been treated globally.
Almost a year later she was told she had the primary progressive form. She said: ‘I felt so isolated when I was told by doctors there was nothing they could do for me.
‘It was like being discriminated against – it’s not my fault I have this particular type of MS.
‘Now that there’s a treatment available that could work for me, I finally have a glimmer of hope for the future. Anything that could help me keep my independence for longer would have a massive impact.’
Ms Bowman’s sister Vikki, 52, who lives in Battersea, south west London, was diagnosed with relapsing remitting MS in January 2017.
She said: ‘It was awful knowing I have a world of treatment choices at my fingertips, yet Zoe had nothing.
‘She’s my little sister and a lot of my anxieties around MS have been focused on her, rather than myself, because it’s affected her a lot more than it has me. I’m overjoyed she could now have a shot at hope.
‘And this isn’t just for Zoe – this decision sends a message that people with primary progressive MS matter and they equally deserve treatments and care.’
Simon Stevens, chief executive of NHS England, said: ‘Today the NHS is making a significant advance in the care of people living with multiple sclerosis.
‘This latest innovative deal is further proof that companies willing to work flexibly with the NHS can secure a constructive partnership that benefits both patients and taxpayers.’
NICE said it couldn’t recommend the drug last year because it wasn’t good use of ‘limited’ NHS resources.
Meindert Boysen, director of the Centre for Health Technology Evaluation at NICE, said: ‘Our earlier draft guidance acknowledged that ocrelizumab represents an important development in the treatment of a condition for which there is a large unmet need.
‘Unfortunately we couldn’t recommend it at the price offered at that time because it did not represent a cost-effective use of limited NHS resources.
‘We are therefore pleased that NHS England and the company have been able to reach an agreement that will see this important new treatment made available to thousands of people with this form of MS.’
MS is the most common disabling neurological condition, affecting around 100,000 people in the UK. Around 650 each year are diagnosed with the primary progressive form (like Zoe, pictured)
WHAT IS MULTIPLE SCLEROSIS?
Multiple sclerosis (known as MS) is a condition in which the immune system attacks the body and causes nerve damage to the brain and spinal cord.
It is an incurable, lifelong condition. Symptoms can be mild in some, and in others more extreme causing severe disability.
MS affects 2.3 million people worldwide – including around 400,000 in the US, and 100,000 in the UK.
It is more than twice as common in women as it is in men. A person is usually diagnosed in their 20s and 30s.
The condition is more commonly diagnosed in people of European ancestry.
The cause isn’t clear. There may be genes associated with it, but it is not directly hereditary. Smoking and low vitamin D levels are also linked to MS.
Symptoms include fatigue, difficulty walking, vision problems, bladder problems, numbness or tingling, muscle stiffness and spasms, problems with balance and co-ordination, and problems with thinking, learning and planning.
The majority of sufferers will have episodes of symptoms which go away and come back, while some have ones which get gradually worse over time.
Symptoms can be managed with medication and therapy.
The condition shortens the average life expectancy by around five to 10 years.
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