Thursday March 13 2014 11:00 AM
Recently I was lucky enough to attend a media briefing in sunny Barcelona hosted by Novartis (makers of Gilenya) ahead of a conference - Advancing Research in MS and the Brain.
The conference brought together leading neuroscientists and neurologists to identify gaps in knowledge and treatments of Multiple Sclerosis as well as exchange ideas on current and future research. At the briefing I was made aware of some facts and figures regarding where we stand with MS in 2014. I thought that I might share with you some of the information I received and when better to share it all with you than during BRAIN AWARENESS WEEK 2014. I know it's important to keep things short and readable and so I wouldn't dream of stuffing all the information into this one blog. Keep an eye over the next while when I will be categorizing the information into topics such as Brain Atrophy and Imaging Challenges faced by Young People with MS and A Collaborative Approach to Care. For now I will hit the basics on where we are with MS in 2014.
Prof. Alan Thompson, Dean of Faculty of Brain Sciences in UCL Institute of Neurology London, outlined some of the changes that have occurred over the years in relation to MS. He described MS as something which was once untreatable, unmanageable and unpredictable and continued by saying that it is now treatable and manageable while still remaining unpredictable. On the information sheets provided by Novartis it stated that in 1948 the average life expectancy for someone with MS was 17 years after the onset while now it is believed it does not affect life expectancy in any significant way. MS is diagnosed in twice as many women than men and the age range during which most people are diagnosed is between 20 and 40. In 1990 the only treatment available for MS targeted only the symptoms. In 1993 the first disease modifying therapy was approved, by 2001 there were six available and 2010 saw the approval of the first oral form of therapy. There are currently over 30 forms of therapies in trial phases, so the future is looking pretty bright!
The European Brain Council (EBC) have pledged to make 2014 the Year of the Brain. They hope to increase public awareness of neurological disorders and also focus on protecting the brain. In 2010 the cost of neurological conditions across 30 European countries amounted to more than that of cancer, diabetes and cardiovascular disease combined, coming in at a total of €798 billion. The cost of MS in the same year was approximately €14.6 billion. See an EBC link below for information.
During this briefing I was introduced to the Atlas of MS. This was launched in Copenhagen in 2013 and included data from 124 countries. In their data collection it was estimated that there are 2.3 million people worldwide with an MS diagnosis, an increase of 2.1 million since 2008. This is thought to be due to improved access to resources such as MRI scanners. It is now understood that MS touches every area of the world but is far more prevalent in some areas than others. Since 2008 the number of MRI scanners has increased by half and a 30% increase in the number of neurologists was recorded. However there are large inequalities in this area. It was said that MSers of 1 in 5 countries do not have an organisation to represent them. To keep this at a readable length I will provide the link instead of getting into the nitty gritty details of the findings of the data collected. It is well worth a look and you will find the link for this towards the bottom of the page.
Mr. John Golding, President of the European Multiple Sclerosis Platform (EMSP), dealt with the personal and societal challenges of MS. Again, to keep this short(ish) and sweet I will only give the tip of the iceberg on this matter. The EMSP have an MS Barometer which is a comparative survey of the situation of 38 countries in relation to 7 topics including Medications on the Market and Empowerment of People with MS. In the overall barometer results Ireland came in with a score of 138 points, which was up from 2009 where we scored 112 on the barometer. The highest overall score was Germany with 207 points and the lowest was Belarus with 46 points. In the category of Access to Treatments and Therapies Ireland came in at 42 out of a possible 70 points. Italy scored highest with 68 points. If you wish to delve into the survey results please find the link below.
Since it is Brain Awareness Week it is so very important to raise awareness for neurological conditions - they are often invisible but affect so many people. Keeping the brain protected and preventing any harm we can is key for us all. It was highlighted during the briefing that drinking large amounts of alcohol is dangerous, as is smoking, and can lead to the destruction of many brain cells. These are things we all know, things that are true not just for the MSers but for everyone. As MSers we have more of an awareness perhaps. In my opening paragraph I mentioned brain atrophy (which I will deal with in a separate blog at a later stage), to highlight the fact that we all need to take care I will tell you that the changes in the brain of a 'normal' person in normal control over a one year period is 0.2-0.4%, in MS patients it is 0.5-1%. It may seem like a small percentage, but it's really not. We need to do all we can to protect our brains and prevent anything that we possibly can.
There is so much unpredictability to MS, so much is out of our control, but we can make sure that we do all we possibly can to protect ourselves, and we should.