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Appointment today with the neurologist and must be focused. Need to discuss :
- 29 July 2011 Doctors begin major stem cell trial for MS patients
Multiple Sclerosis Pill Fingolimod Not Good Value For NHS Money Says NICE, UK
Trials showed the drug, Pill named Fingolimod, halved relapse rates among some patients
- Ms is genetic... cousin discovery and daughter problems
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29 July 2011 Last updated at 06:00
Bone marrow stem cells may be able to protect and repair A major clinical trial will investigate whether stem cells can be safely used to treat multiple sclerosis (MS).
It is hoped eventually to slow, stop or even reverse the damage MS causes to the brain and spinal cord.
The trial, involving up to 150 patients across Europe, is due to start later this year.
Dr Paolo Muraro from Imperial College London said: "There is very strong pre-clinical evidence that stem cells might be an effective treatment."
Researchers will collect stem cells from the bone marrow of patients, grow them in the laboratory and then re-inject them into their blood.
The stem cells will make their way to the brain where it is hoped that they will repair the damage caused by MS.
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End Quote Dr Doug Brown MS SocietyThese experiments have confirmed that these stem cells hold that potential - but these need to be confirmed in large scale clinical trials”
The research has been part-funded by the UK's MS Society, which is concerned about the availability of unproven stem cell treatments.
In recent years many people living with MS have been attracted to overseas stem cell clinics which claim to cure long-term conditions in exchange for large amounts of money.
But there is no proven stem cell therapy available for MS anywhere in the world.
The MS Society hopes these new trials will eventually lead to a proven treatment - and a reduction in the draw of overseas treatments.
Common condition
MS is the most common neurological condition to affect young people in the UK.
Three million people are thought to be affected worldwide and up to 100,000 in the UK.
The condition is caused by the body's own immune system attacking and damaging a substance called myelin in the brain and nerve cells.
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End Quote Sir Richard Sykes Chair, UK Stem Cell FoundationI am delighted that we have at last progressed stem cell research to this stage, which will bring much-needed hope to so many people affected by this devastating condition”
The myelin damage disrupts messages from the brain to the body which leads to a number of symptoms such as sight loss, bladder and bowel problems, muscle stiffness and eventually physical disability.
Drugs are available to alleviate the symptoms - but they do not prevent the progression of the condition.
Experiments in test tubes and laboratory animals suggest stem cells extracted from bone marrow may be able to offer a more effective treatment.
Their role in the bone marrow is to protect the cells that make blood. But they also seem to protect myelin from attack by the immune system.
There is also some evidence that these cells might also be able to repair damaged tissue.
Hold potential
Dr Doug Brown, of the MS Society, said: "These experiments have confirmed that these stem cells hold that potential - but these need to be confirmed in large scale clinical trials."
There is some way to go, however, before laboratory promise can be translated into a treatment that can be offered to patients.
The international team will begin so-called phase two clinical trials in six months' time designed to determine whether the treatment is safe and effective.
It will take five years to carry out and assess the results of the trials after which large phase three trials may be required.
But Dr Muraro believes that the stem cell approach has real potential.
He said: "The great hope is the fact that we are exploiting a biological system that has evolved over millions of years and harnessing it for treatment that takes advantage of the stem cells' flexibility."
Sir Richard Sykes, chair of the UK Stem Cell Foundation, said Dr Muraro's research was the first of its kind to take place in the UK.
"Given the high incidence of MS in the UK in comparison to other countries, I am delighted that we have at last progressed stem cell research to this stage, which will bring much-needed hope to so many people affected by this devastating condition."
Correction 29 July 2011: This story has been amended after the MS Society corrected a statement it had made suggesting stem cells from the brains of aborted foetuses had been used in research it was funding. The society said that adult neural cells were in fact being used.
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Multiple Sclerosis Pill Fingolimod Not Good Value For NHS Money Says NICE, UK
Find other articles on: "Pill named Fingolimod"
In a draft decision, England and Wales independent body that recommends whether drugs should be covered by the National Health Service, decided that at £20,000 a year fingolimod "would not be a cost effective use of NHS resources." Thousands of multiple sclerosis sufferers who do not respond to current medications were disappointed.
EU regulators gave fingolimod preliminary marketing approval at the beginning of this year. Fingolimod is made and marketed by Novartis under the brand name Gilenya. The company applied for it to be covered by the NHS for MS patients who have not responded to current medications.
The National Institute for Clinical Excellence's (NICE) recommendation does not mean that a drug is not approved, it only means that a drug will probably not be covered by the National Health Service (NHS) - in other words, the patient will have to pay for the prescription.
Current MS medications, such as beta interferons and Tysabri must be injected - patients either inject it themselves or have to go to hospital every few days for supervised infusion. Gilenya is an oral pill, it represents a considerable change in MS treatment.
According to an article in NEJM (New England Journal of Medicine), those on fingolimod had 50% fewer disabling relapses compared to those on interferon beta.
Professor Carole Longson, Director of the Health Technology Evaluation Centre at NICE said:
"While it's important that people with multiple sclerosis have treatment options, NICE has to ensure that the NHS provides treatments that bring benefits that are value for money. This is so that everyone who uses the NHS can receive the best care possible.
Unfortunately our independent committee wasn't given sufficient evidence to show that fingolimod could reduce relapses considerably better than the other treatments currently being used. Based on the available clinical evidence and economic analysis, our independent committee concluded that fingolimod would not be effective good use of NHS resources.
We encourage healthcare professionals, people with MS and our other relevant third parties to comment on our committee's provisional recommendation so that they can contribute to the development of this guidance."
There will now be a consultation. However, if the decision does not change, then the only way an MS patient will get fingolimod costs covered is if their PCT or hospital makes an exception and pays for it - resulting in a postcode lottery.
Simon Gillespie, Chief Executive of the MS Society, said:
Unfortunately our independent committee wasn't given sufficient evidence to show that fingolimod could reduce relapses considerably better than the other treatments currently being used. Based on the available clinical evidence and economic analysis, our independent committee concluded that fingolimod would not be effective good use of NHS resources.
We encourage healthcare professionals, people with MS and our other relevant third parties to comment on our committee's provisional recommendation so that they can contribute to the development of this guidance."
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19 April 2011 Last updated at 10:01 Help
http://www.bbc.co.uk/news/health-13126727 include BBC interview..
The first pill that could help relieve the early stages of multiple sclerosis is being made available.
It offers an alternative to those failing on the current treatments of injections and hospital infusions.
Trials showed the drug, named Fingolimod, halved relapse rates among some patients.
It is estimated that 100,000 people in the UK have MS.
The NHS advisory body, the National Institute for Health and Clinical Excellence (NICE), is now reviewing the drug to assess the cost effectiveness of the new treatment. Its recommendations will decide if the drug will be made freely available to NHS patients in England. It costs approximately £20,000 a year to treat a patient.
Sam Sheppard, who has had MS for five years, joins BBC Breakfast together with Dr Doug Brown, head of biomedical research at the MS Society.
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to what triggers MS
In MS, the immune system attacks myelin in nerve fibres Multiple Sclerosis
- MS is the most common disabling neurological disease among young adults
- It affects around 100,000 people in the UK
- MS is most often diagnosed in people between the ages of 20 and 40
- Research suggests that a combination of genetic and environmental factors may play a role in its development
- There is around a 2%chance of a child developing MS when a parent is affected
- MS is almost unknown in places like Malaysia or Ecuador, but relatively common in the UK, North America, Canada, Scandinavia, southern Australia and New Zealand
- Source: MS Society
It looked at DNA from almost 10,000 MS patients, and more than 15,000 healthy controls.
Twenty three known genetic variations, common in the general population, that give a tiny increase in the risk of getting MS were confirmed, and 29 new ones identified.
Another five are strongly suspected as being involved, bringing the total number of genetic variations associated with MS to 57.
Professor Alistair Compston of the University of Cambridge told the BBC: "This is suddenly a big new number of genes to try to understand.
"80% of the genes that are implicated by the 57 'hits' are immunological. This shouts out that this is an immunological disease at the beginning. This is a very important confirmation."
Around 2.5 million people around the world have MS, 100,000 of them in the UK.
MS is not directly inherited and there is no single gene that causes it. However, research suggests a combination of genes common in the general population make some people more susceptible to developing the neurological disorder.
Other environmental factors are involved, possibly something in the environment, such as a virus or bacteria, or Vitamin D from exposure to sunlight.
Simon Gillespie, Chief Executive of the MS Society said: "By identifying which genes may trigger the development of MS, we can identify potential 'risk factors' and look at new ways of treating, or even preventing, the condition in the future."
Some of the genes found to be important in MS are also implicated in other autoimmune disorders, such as Crohn's disease and Type 1 diabetes, a separate research paper, published in PLoS Genetics, has reported.
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