LONDON, April 14 /PRNewswire/ --
- ATTN: Yorkshire Editors
A Group of people with multiple sclerosis (MS) in Yorkshire are being denied access to a vital drug that has been proved to be the most effective treatment for their condition.
Mid Yorkshire Hospitals NHS Trust has failed to provide people living with a rapidly evolving and severe form of MS access to Tysabri despite being legally required to do so by the Government's drugs watchdog.
MS is the most common disabling and incurable neurological disorder affecting the central nervous system in young adults.
Tysabri has been proven to consistently reduce periods of disability by two thirds and slow overall disability progression by 40 per cent. It was approved by the National Institute for Clinical Excellence (NICE) in August 2007.
But Penny Copley, 42, who lives in Castleford and is a member of the Pins and Needles support group, said the situation was "desperately unfair".
Penny is one of 40 people across the region who are being denied access to the drug by Pinderfields General Hospital.
She added: "I have not had the benefit of Tysabri yet and it should have been made available since November last year.
"We know of others who are being prescribed Tysabri at Leeds hospital and yet Pinderfields still refuses to provide the treatment. A number of us are considering moving hospital if we can because of the unacceptable post code lottery that is currently in place."
The MS Society campaigned for NICE to approve Tysabri after trials of the drug proved it would benefit people with the rapidly evolving form of MS.
Jayne Spink, Director of Policy and Research at the MS Society, said: "This situation is outrageous and unacceptable. Tysabri has a clinically important effect on disability progression in people with highly active forms of MS, which has not been seen in other drugs.
"Statistically it significantly reduces the probability of sustained disability and improves health-related quality of life. It is essential that people with this form of MS have access to this drug as soon as possible."
Notes to Editors:
What is Tysabri?
- Tysabri (pronounced tie-sab-ree) is the brand name for natalizumab (pronounced natt-al-iz-yoo-mab) and is a drug for people with relapsing remitting forms of multiple sclerosis (RRMS)
- It works in a different way to other disease modifying treatments (i.e. beta interferon and glatiramer acetate) by preventing immune cells leaving the blood stream and entering areas of inflammation (e.g. MS lesions in the brain and spinal cord)
- Tysabri is licensed for use in the UK and has been approved for treatment on the NHS for certain groups of patients with MS. Tysabri is available for people with rapidly evolving, severe, relapsing remitting multiple sclerosis
- The NHS should provide funding and resources for medicines and treatments which have been recommended by NICE within 3 months of NICE final guidance, made on 22 August 2007. PCTs now have legal obligation to fund approved treatment.
How effective is Tysabri?
- Two large phase III clinical trials have examined the efficacy of Tysabri in people with MS. The first trial examined Tysabri administered alone. The second trial examined Tysabri in combination with Avonex (beta interferon). Both phase III trials lasted for two years and examined the effect of Tysabri on relapse rate and disability progression
- Results after one year of the phase III trials showed that Tysabri reduced relapse rate by 67% and had beneficial effects on MRI measurements. Two year data on disability progression indicates that it slows this by 42%
- Tysabri and Avonex in combination were shown to reduce relapse rates by over 50% compared to Avonex alone
How is Tysabri taken?
- Tysabri is given once a month as an intravenous infusion (into a vein) over a one-hour period in a hospital or clinic setting. Observation for an hour is required following the infusion
The MS Society
- The MS Society (http://www.mssociety.org.uk) is the UK's largest charity dedicated to supporting everyone whose life is touched by MS, providing respite care, an award-winning freephone helpline (0808 800 8000), specialist MS nurses and funds around 40 vital MS research projects in the UK
- Multiple sclerosis is the most common disabling neurological disorder affecting young adults and an estimated 85,000 people in the UK have MS
- MS is the result of damage to myelin - the protective sheath surrounding nerve fibres of the central nervous system - which interferes with messages between the brain and the body
- For some people, MS is characterised by periods of relapse and remission while for others it has a progressive pattern
- Symptoms range from loss of sight and mobility, fatigue, depression and cognitive problems. There is no cure and few effective treatments
For media enquiries please contact: Chris Bentley, cbentley@mssociety.org.uk, MS Society Press Office on +44-(0)20-8438-0840, or the out of hours duty press officer on +44-(0)7909-851401.
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