SPECIAL REPORT / Access to treatment and services varies remarkably for EU citizens diagnosed with multiple sclerosis, depending on which country they live in, according to a survey by the European Multiple Sclerosis Platform (EMSP).
The MS Barometer 2011, which has measured and compared wellbeing and quality of life for people living with multiple sclerosis in 33 European countries, including 26 EU member states, shows huge disparities in terms of access to treatment, therapies and employment.
While Germany overall came on top as the best country for people with multiple sclerosis in the EU, scoring 207 points, ahead of Sweden (184 points) and Austria (178), Bulgaria scored the fewest points (62 points), followed by Poland and Lithuania with 87 and 88 points, respectively.
Maggie Alexander, CEO of the EMSP, told EurActiv that the impact of having a condition such as multiple sclerosis is much more severe in countries that fail to provide the optimal treatment and services to help people maintain control of their disease, including remaining economically independent and fully participate in society.
“The EMSP will continue to drive forward effective collaborations with EU institutions and all those that share our commitment to escalate progress in the vital areas of research, healthcare and employment,” Alexander said.
“This will help to reduce the health inequalities that are faced by far too many of the nine million people in Europe living with neurodegenerative conditions,” EMSP’s CEO continued.
Multiple sclerosis is a potentially disabling disease. It strikes the white matter of the brain and spinal cord and affects the rest of the nervous system. According to the EMSP, multiple sclerosis has great consequences for society as more than one million people in Europe are affected indirectly through their role as carers and family members.
Younger people between 20 and 40 are the ones who are the most often diagnosed with multiple sclerosis. Women are diagnosed twice as often as men.
More than 120,000 people with multiple sclerosis live in Germany. This is more than in most other European countries. The EMSP said that Germany, with its long tradition of universal healthcare, provides strong protection for all disabled people.
When it comes to multiple sclerosis, the treatment in Germany is carried out by inter-disciplinary teams. The full cost of disease-modifying drugs is reimbursed by government without limits on duration of treatment and the treatment of symptoms is also fully covered. People also have unlimited access to rehabilitation.
Another positive fact about Germany is that good access to new medication and that specialised palliative care are offered while the country also scores high on research.
Germany also scores best in employment and job retention for people with multiple sclerosis, the barometer confirmed. This is due to protective legislation and flexible working conditions. 32% of people with MS are employed full time and 13% part time. An early retirement pension fund also exists.
Restricted access to care
At the same time, an EU country with low government spending on healthcare, like Poland, provides poorer treatment and quality of life for people with multiple sclerosis.
Poland has a very high ratio of people with multiple sclerosis, 120 in 100,000 people affected. Around 500 people are newly diagnosed each year. However, access to disease-modifying treatment provided is restricted. For example, after five years, access is transferred to the next person on the waiting list.
And though access to therapy for treating symptoms is relatively high, state reimbursement is modest with less than one-third of people having access to rehabilitation services.
Concerning employment, Poland fairs well due to strong laws against discrimination in the workplace. The country also scores well on empowerment of people with multiple sclerosis.
Lacking EU response
In September 2012, the European Parliament passed a written declaration initiated by the Romanian MEP Petru Luhan from the European People’s Party (EPP) on tackling multiple sclerosis in the EU, endorsed by more than 400 MEPs, calling for the European Commission and member states to enhance equal access to quality care.
But this commitment was not followed up with any concrete measures to reduce the inequalities for people with multiple sclerosis across the EU.
The EMSP said that the EU should live up to its declaration by addressing four major problems. First of all, the EU needs a closer scientific collaboration and comparative research on multiple sclerosis.
Secondly, there should be equal access to treatment and flexible employment policies for people with chronic neurological disorders such as multiple sclerosis.
Thirdly, there should be equal access to quality care, the EMSP said, for example by using certified educational training tools and lastly, collection of patient data at national level is encouraged in order to compare best practices.
EurActiv has asked Luhan as well as other MEPs, who have previously been involved with issues related to multiple sclerosis, for an interview. Unfortunately, they all declined.
According to estimates by the European Brain Council (ECB), the direct cost of healthcare related to brain diseases has increased from €386 billion in 2004 to €798 billion in 2010, measured across 30 European countries.
In an effort to reverse the trend, the EBC has pledged to make 2014 the 'Year of the brain' in Europe.
The European Commission's DG Research has together with the Innovative Medicines Initiative (IMI) launched one of Europe's largest public-private initiatives aiming at speeding up the development of better and safer medicines.
The second project, IMI2, has a budget of €3.45 billion.
- 2014: 'Year of the brain' in Europe.
- 7-10 May: Conference marking the 25th anniversary of the European Multiple Sclerosis Platform (EMSP) in Dublin, Ireland.
- The European Brain Council (EBC): Website
- European Multiple Sclerosis Platform (EMSP): Website
- European Multiple Sclerosis Platform (EMSP): Under Pressure
- European Multiple Sclerosis Platform (EMSP): Emma Rogan: Vodafone World of Difference Winner
- European Multiple Sclerosis Platform (EMSP): Ready to Work? Meeting the Employment and Career Aspirations of People with MS
- European Multiple Sclerosis Platform (EMSP): Life and Employment Opportunities of Young People with Chronic Conditions
- European Multiple Sclerosis Platform (EMSP): Swiss Case Management: People with MS
- European Multiple Sclerosis Platform (EMSP): Employment and MS: An excellent information resource for employers and people with MS
- Multiple Sclerosis Foundation: Website
- International Progressive MS Alliance: Website