‘Not All Disabilities Are Visible’

On International Day of People with Disabilities, the MS community calls for urgent policy change

The 2020 MS Barometer has identified over one million people living with MS in Europe. Many manage with the unpredictable and often invisible symptoms of this disease with little formal support. Today, we call for better policies in health and social care that meet their personal needs at every stage.

The theme of International Day of People with Disabilities this year is ‘Not all disabilities are visible’. MS is one of many illnesses where debilitating symptoms may not be obvious to outsiders – symptoms like fatigue, pain, difficulty speaking and cognitive challenges. But in many parts of Europe, access to formal support such as social care is linked to physical disability status. New research conducted as part of the 2020 MS Barometer shows that numerous gaps in MS care persist in social care and elsewhere. Urgent action is needed to address the unique needs of people with MS and secure adaptable support responsive to this unpredictable disease. Policymakers and decision-makers at European and national level, as well as health and social care professionals, the pharmaceutical industry and patient advocacy groups, all have a role in securing integrated health and social care for every person with MS.

EMSP has directly seen the burden and impact of MS grow over the past decade. Since 2008, we have been analysing MS care in Europe with the MS Barometer survey. Ultimately the goal of this research initiative is to improve access to high-quality, personalised MS care in every European country. This year’s survey was inspired by the World Health Organization (WHO)’s vision for integrated care, where “all people have equal access to quality health services that are co-produced in a way that meets their life course needs, are coordinated across the continuum of care, and are comprehensive, safe, effective, timely, efficient and acceptable; and all carers are motivated, skilled and operate in a supportive environment”.

When comparing against previous iterations of the MS Barometer, the 2020 edition has demonstrated notable improvements in care, but significant gaps persist. Of particular note is the increase in availability and reimbursement of disease-modifying drugs (DMDs) in many European countries. However, there are common themes to the areas which have been neglected by policymakers. For example:

• In at least 7 countries, people with MS are not legally protected from dismissal from work due to their condition, putting them at risk of discrimination based on their disease.
• Among the 15 countries that reported data, only about half of people with MS are in full-time or part-time employment, leaving too many at risk of financial hardship and a loss of independence.
• Across Europe, there is lower availability and lower reimbursement for symptomatic medications than for DMDs, making it challenging for people with MS to secure relief from the disabling symptoms of their illness.
• Many people with MS continue to struggle to access (and receive full reimbursement for) different rehabilitation options such as physical, psychological, cognitive and occupational rehabilitation. This despite rehabilitation being crucial to help manage daily living with the increasing disability brought on by MS.

People with MS need policy change today

On International Day of People with Disabilities, we call on our allies across Europe to support people with MS. In the context of the COVID-19 pandemic, supporting people with disabilities has become even more urgent. Our health and social care systems have been stretched more than ever before, and new challenges and barriers to delivering support have emerged. It is up to the European community to overcome these challenges by reimagining health and social care for people with disabilities in the post-pandemic world.

We hope that the unique insights from the 2020 MS Barometer will be used by policymakers and decision-makers to make sustainable, effective policy changes that positively impact the lives of more than 1 million people with MS in Europe. Changes made to help people with MS will have a positive impact on all people with disabilities, opening opportunities for millions to live fuller lives, and ultimately enriching us all.

MS Barometer 2020 Highlights Webinar

Today, on the International Day of Persons with Disabilities (3rd December 2020), we organized a webinar chaired by MEP Tilly Metz (Member of the European Parliament and President of the MS Society of Luxembourg) to draw stakeholder attention to the International Convention on the Rights of Persons with Disabilities by presenting the highlights of the latest edition of the Multiple Sclerosis (MS) Barometer.

Did you miss it? Watch back the webinar below: