Empowering Lives, Shaping the Future – a Manifesto for a Unified Approach to Multiple Sclerosis

Unmet Needs in the Management of Multiple Sclerosis

• Inequitable Access to Appropriate and Timely Care

MS is unpredictable. Timely diagnosis, treatment, and support influence the progression of the disease. This contributes to a better quality of life for people living with MS. Critical systemic issues are revealed by the differences existing in availability of treatment and care across Europe.

• • Rehabilitation remains overlooked. Less than half of MS patients access required physical rehabilitation, and even fewer psychological, cognitive, and occupational rehabilitation.
  • The shortage of specialists, exacerbated by divided attention and an increasing lack of personnel, leads to inadequate care for MS patients.
  • DMDs are vital in MS care, minimising relapses and slowing disease progression. Inequalities in the availability and reimbursement policies for Disease-Modifying Drugs (DMDs) among Member States represent another barrier for MS patients to access adequate and timely treatment. In 2018, 43% of people with MS in Europe were not receiving DMD treatment, facing barriers such as high co-payments, reluctance from healthcare professionals to approve changes to more expensive therapies, shortages of neurologists to prescribe and oversee treatments, and geographical challenges in accessing treatment.

We call on the EU to lead the way by actively supporting the specialisation of healthcare professionals in general education pathways for neurological conditions such as MS and similar conditions, including the development of accredited MS specialist courses for healthcare professionals, driving their widespread adoption across all countries.

• Social Inclusion and Protection

The unmet needs of individuals with MS extend beyond health, impacting social care, employment, and education.

• • MS diagnoses often disrupt pivotal life stages like education, career-building, and family planning. MS is commonly diagnosed at age 20–40 years and approximately 75% of patients with MS are women.
  • 21 countries in Europe still lack adequate support for young people with MS to complete their education,
  • In at least seven countries, legal protection against unfair dismissal from work is absent.
  • Only five EU countries reported at least 50% of people with MS in employment: Belgium, Czech Republic, Denmark, Finland and Germany.
  • Family caregivers play a key role. Often those are relatives, friends, neighbours providing assistance related to an underlying physical or mental disability for at-home care delivery and assistance in daily activities who are unpaid and have no formal training. Without adequate support, caregivers struggle to provide assistance while maintaining an active professional life and good mental health, leading to potential burnout and strained relationships.

We call for our policy decision-makers to ensure the provision of support including social inclusion, financial assistance and accessibility adaptations for people affected by MS and other progressive neurological conditions. These measures would empower individuals to continue their education, maintain employment, and contribute actively to society.

• Economic and Workforce Impact

People affected by MS count among them dynamic young professionals, individuals in the prime of their careers who can contribute to the European workforce, with the appropriate support.

• • 15 countries across Europe showed that only 48% of people with MS are in full-time or part-time employment.
  • Addressing these unmet needs will allow the retention and harnessing of talents and skills, while fostering a positive impact on society, reducing the strain on disability and unemployment insurance systems.

To empower young people with disabilities, including those with MS, we call for the expansion of employment and educational support through existing European studies and employment programs. Raising awareness about neurological conditions like MS within the workplace is as essential as holding employers accountable for their social responsibility. This involves ensuring the implementation of educational programs provided by civil society organisations and people affected by MS.

Improving the Quality of Life of People Affected by MS Through the Consolidation of Existing EU Actions

The EU has laid the groundwork for implementing Disability Rights, but persistent challenges remain in addressing MS needs. Therefore, we call our policy makers to drive change for healthier and sustainable health and social care systems, building on:

• Charter of Fundamental Rights and European Pillar of Social Rights
• Non-Communicable Diseases Initiative “Healthier Together”
• EU’s Disability Rights Strategy (2021-2030)
• European Commission’s European Care Strategy
• EU’s incentives for research and innovation

Setting the Course on Priorities for 2024-2029

We ask for a single, comprehensive, and cross-sectoral strategy:

1. Prioritise timely and affordable care delivery and access to high-quality rehabilitation services on the agenda of EU institutions, including the Framework for Social Services of Excellence for persons with disabilities.
   • This shall be ensured through the establishment of specialised EU trainings for social care providers and healthcare professionals.
   • Training programmes inspired from existing successful EU-funded projects (e.g. Inter-Specialty Cancer Training (INTERACT-EUROPE)).
2. Empower the European workforce through inclusive employment and education practices and enhanced social support by:
   • Incentivising the recruitment and retention of people with disabilities in employment.
   • Strengthening legal protections against health related dismissal
   • Aligning with upcoming deliverables in the Disability Employment Package.
   • Promoting inclusivity through a unified framework for flexible work and enhanced e-learning
   • Expanding ERASMUS+ Virtual Exchange for adult learners with mobility constraints.
   • Encouraging Member States to establish dedicated funds to increase financial security for people with MS and other chronic conditions.
3. Incentivise data collection and research on MS through existing EU funding programmes:
   • By supporting the development of infrastructures for the real-world evidence data collection and sharing through the European Health Data Space.
   • Fostering a collaborative approach to enhance understanding and management of MS on a broader scale
   • Ensuring that advancements in research translate into tangible benefits for individuals affected by MS,
   • And, finding a cure.

Read the full text here.
To learn more about the recommendations from the MS Barometer 2020, visit: msbarometer.eu.