Is the UK MS Society really the MS Drugs Marketing Board?
According to GlobalData the worldwide MS drugs market was $8.2 billion in 2009 and is expected to increase to $20.2 billion by 2017.
http://www.companiesandmarkets.com/Market-Report/multiple-sclerosis-therapeutics-pipeline-assessment-and-market-forecasts-to-2017-468966.asp
I note that even with the MS market at $8 billion 'there is a high unmet need in the current MS therapeutics market in terms of both safety and efficacy profile'.
Goodness me, are they implying that the existing drugs are not safe or effective? Or maybe they are just suggesting there is scope for improved marketing of MS drugs which are not that safe or effective? Either way I am not filled with confidence.
I see a four page spread in MS Matters (MSS publication), February 2011 dedicated to "New drug treatments on the horizon" - with a summary of drugs available since 1995 through to the oral tablets in the pipeline for us until 2013. Could the Pharmaceutical industry be using our MS Society to do their marketing for them?
Have a read of this document to see how it works:
The Influence of the Pharmaceutical Industry, House of Commons Health Committee
http://www.parliament.the-stationery-office.co.uk/pa/cm200405/cmselect/cmhealth/42/42.pdf
Page 62
Advertising
223. We were told that advertising to prescribers is conducted on a huge scale; it is targeted
and orchestrated to increase prescription of particular drugs in particular groups.
According to Dr Herxheimer, the influence of the industry…is mediated…by the huge volume of pharmaceutical promotion, direct and indirect …and intense public relations activity. Competition in the industry is based far more on innovative marketing methods and public relations than on the effectiveness and safety of its products.187
Patient Organisations
Page 74
260. Over 200 national patient organisations and support groups exist in the UK today.
Such groups provide information and a range of services to their members and the general
public and often campaign for increased access to particular treatments. A goal of many
patient organisations is to influence healthcare policy for the benefit of patients; as the MS
Society described, this aim often coincides with that of the pharmaceutical industry:
The Society and the Industry share the common goal of increasing the resources
available for the treatment and management of MS. There are circumstances in
which the Society will wish to work with the Industry to influence the policy of
government and the NHS, or the attitudes and practices of the professions.223
Page 76
267. Paul Flynn MP described fears that pharmaceutical companies use patient
organisations as “conduits to promote their products in a subtle form of marketing”. This
leads to a situation in which, instead of representing the interests of patients, groups
“become marketing tools for the pharmaceutical companies”.
Referral by the pharmaceutical industry to patient organisations as “ground troops” for lobbying Government to increase access to new drugs is further evidence of this.
I see there is a section at the end of the future drugs spread in MS Matters entitled - "What else does the future hold?" A few snippets:
'MS is KNOWN AS an autoimmune condition' - bit of a worry - all those drugs aimed at something they can't even say IS an autoimmune condition.
Regarding myelin repair it says "therapies that repair damage are the MISSING LINK in treating multiple sclerosis".... Are they joking?? GlobalData's MS market report says there is high unmet need in terms of efficacy and safety profile from the existing MS drugs! And how can anything be a missing link for a disease which is only thought to be autoimmune. Let's save the talk about missing links until we know what causes MS.
The reality is that the drug companies plan to earn a fortune off our MS for the foreseeable future. I remember Doug Brown (Biomedical Research at MSS) describing how stem cell treatment might work when I heard him speak back in October about future MS treatments. From my notes he said “first of all powerful drugs will be used to wipe out the immune system”.... He also referred to the ASTIMS project having “significant side effects and a death rate of 1 to 2%” but it will be 'expanded and go international'. Grief, we people with MS are a truly expendable patient group but, with a projected $20 billion annual value on our heads by 2017, maybe this shouldn't be a surprise.
As someone sitting here with the benefits of CCSVI treatment I read MS Matters and feel like I am in some sort of parallel Dali world. My MS symptoms have improved beyond belief from simple, cheap venoplasty in my stenosed internal jugular veins. However the MS Society would seemingly prefer me to remain in the MS drugs market pipeline through to 2013 and beyond (oh, with a smidgin of physiotherapy and cognitive behavioural therapy thrown in with the drugs).
Don't bother looking for CCSVI in the MS Society's description of what the future holds. It doesn't feature. As I heard Doug say back in October “we must emphasise treatment for CCSVI is NOT a treatment for MS”. Well he got that bit right. Treatment for CCSVI is a treatment for congenital venous malformations - which over 95% of PwMS just happen to have.
There is a future planned for us by the MS Society and it doesn't include restoring proper blood flow and oxygen around our brains.
It includes pumping us full of Tysabri, Cladribrine, Fampridine, Gilyena (Fingolimod), Alemtuzumab, Teriflunomide, Laquinimod and “more than half a dozen others...” for the next ten years until they can finally drag us (or more likely wheel us) to the stage of wiping out our immune systems to try stem cell treatments.
From my personal experience, treatment for CCSVI has vastly improved my fatigue, cognition and balance. I think GlobalData will be assessing the impact on the MS drugs market of thousands more people like me. Or maybe they already have. Maybe the MS Society is just the unwitting conduit of a huge MS drug industry marketing drive before the masses find out about CCSVI. Unwitting? Mmmm.....