Press Releases

7th World Parkinson’s Day - Only a fraction of Parkinson’s disease patients have access to surgery that could change their lives

11 April 2004

7th World Parkinson’s Day - Only a fraction of Parkinson’s disease patients have access to surgery that could change their lives

On 11 April 2004, the 7th World Parkinson’s Day, Parkinson's Disease associations and patients around the world will be highlighting the plights and needs of patients suffering from this very serious and debilitating disease. Parkinson’s Disease cannot (yet) be cured, but over the past few years medical technology has helped to provide an innovative therapy - known as deep brain stimulation - to help manage the disease. Although deep brain stimulation can greatly benefit patients and help them lead normal and productive lives, not every patient who could benefit from this therapy, has access to it. This is due, among others, to lack of information, waiting lists at hospitals equipped to provide this treatment, insufficient funding and in some cases also the lack of qualified surgeons.

Michael Holman, a journalist based in the UK and who has Parkinson’s Disease is a great advocate of brain stimulation: “I guess the best way to summarise my prospects before the operation, was that I was facing early retirement - a retirement in which I was going to be confined to the house but I can now travel and work as I did before and pretty much function normally. The impact of the operation is very easy to see: if one turns off the brain pacemaker device in my chest I start to shake uncontrollably within a few seconds. When it is switched on again, the shake is eliminated: – it is most extraordinary, because for the while, I am back in the world of Parkinson’s – not a world I want to go back to!”

Approximately one fifth of all Parkinson’s disease patients (which amounts to approximately 200,000 patients in Europe alone) may be suitable candidates for deep brain stimulation. Whereas 29.4% (of the suitable candidates) are treated with this innovative therapy in Switzerland, this percentage is only 9.8% in France, 9.3% in the Netherlands, 8.4% in Spain, 5.2% in Germany and 4.6% in the United Kingdom.

There is obviously a need to rectify this situation and, as Mr. Holman says: “There are thousands uponthousands of people – multiplied by their friends and families - who would benefit from the operation, but who have not been able to take advantage of it. Not because of the cost but because they do not have access to adequate, accurate information, and thus lack the knowledge and the confidence to insist on what should be a right”.

Health First Europe believes it is essential that Parkinson’s Disease patients are given the information and access to treatments they require to allow them and their physicians to make informed decisions on how best to deal with this terrible disease. As Mr. Holman’s case shows, it is possible for many of the approximately 1 million European Parkinson’s sufferers, as well as their families and friends, to lead a normal life. It simply requires dedication, an open mind and a sense of urgency by the various decision makers that decide on behalf of patients which treatments are and which are not “suitable”.

Established in 2004, Health First Europe is a not-for-profit, non-commercial alliance of patients,healthcare workers, academics, healthcare experts and the medical technology industry. Its primary aim is to ensure that healthcare is regarded as a vital investment in the future of Europe and that every European citizen should benefit from the best medical treatments available. As part of a series of awareness-raising activities, Health First Europe organises events and issues publications with the aim of communicating the following core messages to EU decision-makers and opinion leaders:

• There are weaknesses in European healthcare systems; a re-think is required in order to Meet current and future health challenges
• Patients and clinicians should have equitable access to modern, innovative and reliable medical technology
• The development of new and flexible modes of healthcare delivery will benefit both patients and healthcare providers
• “Health equals wealth”. Health is a productive economic factor in terms of employment, Innovation and economic growth