Generalised myasthenia gravis (gMG) may be a rare disease, but the questions it raises for Europe’s healthcare systems are increasingly urgent: how quickly can medical innovation reach patients, and how can access be delivered evenly across countries and communities?
For people living with gMG the stakes are high. gMG is a chronic, autoantibody disease that causes fluctuating and potentially severe muscle weakness.1, 2 Symptoms can affect speech, swallowing, mobility and, in some cases, respiratory function.3 While there is still no cure, advances in treatment are transforming expectations for disease management and quality of life.
This marks an important shift in care. For decades, many patients faced unpredictable disease progression and significant disruption to daily life.4, 5, 6, 7 Today, effective management and improved functional outcomes are becoming a more achievable goal for many people living with gMG.8 Yet these advances only matter if patients can reach them in practice.
Scientific progress is essential, but patient outcomes will ultimately depend on whether access keeps pace.
Across Europe, we’re still seeing differences in diagnosis, specialist care and reimbursement.9, 10 As a result, the availability of innovation continues to depend heavily on geography, healthcare infrastructure and national funding frameworks.9
“For people living with gMG, the challenge is not only the disease itself, but also the uncertainty that comes with it. We now have treatments that can change lives, yet too many patients still struggle to access them.” said Dimitris Zaftis, Secretary of the European Myasthenia Gravis Association (EuMGA).
The consequences of these barriers extend beyond delayed treatment, contributing to broader social and economic impact and costs.
Advancing Diagnosis and Access Across gMG Care Pathways
Delays in diagnosis continue to be an important barrier to timely and effective care. gMG is a rare disease and symptoms can fluctuate. That is why patients can remain misdiagnosed for months or even years.2, 11 Muscle weakness, fatigue and difficulty swallowing may initially be attributed to other neurological or muscular conditions, delaying appropriate treatment and accelerating disease progression.3
Even after diagnosis, access to specialist expertise is not always even. Multidisciplinary neuromuscular care is frequently concentrated in major urban or tertiary centres, while regional and rural communities continue to face more limited access to specialist support and advanced therapies.
“When people living with gMG can access the right care at the right time, the impact goes far beyond symptom control. With consistent care, reductions in fluctuating muscle weakness and fatigue could help preserve independence, support mental wellbeing, and enable participation in employment and everyday life,” said Carlo Antozzi, M.D., Neuroimmunology and Muscle Pathology Unit of the Neurological Institute Foundation C. Besta of Milan, Italy.
“My gMG diagnosis ultimately led to me leaving my job, as my symptoms meant I couldn’t communicate with my colleagues properly,” said one person living with gMG.
Experiences like this are not isolated; they point to a broader challenge in rare disease care across Europe, where scientific innovation often moves faster than health system uptake.
The opportunity now is to ensure that health systems keep pace with scientific progress.
Improving access to modern gMG care is not simply about adopting new medicines. It is about strengthening healthcare systems so that timely and precise diagnosis, specialist referral and effective long-term disease management become more consistent across countries. Their value extends beyond the clinic, with implications for society, the economy and health system resilience.
Why Better gMG Care Matters Beyond the Clinic
The implications of gMG care extend well beyond individual patient outcomes.
gMG often affects people during their prime working years, meaning the consequences of delayed diagnosis or uncontrolled symptoms are felt across labour markets, families and national economies.12, 13 Studies in recent years found that between 13% and 40% of people living with gMG are unable to work, while 11.4% retire early because of the disease.13, 14, 15
The burden extends beyond the patient. Families and caregivers are often needed to provide ongoing support, while disrupted employment and reduced social participation can create wider economic and societal consequences over time.16
If we take a longer lens, earlier diagnosis, faster referral pathways and effective disease management can help people remain active, independent and economically engaged for longer; in turn, this could reduce hospital admissions and ease pressure on already strained healthcare systems.17, 18
Seen in this light, health is not only a clinical issue but also a key enabler of wider social and economic participation. Health changes everything.
As Europe focuses increasingly on competitiveness, resilience and workforce participation, chronic rare disease management should not be viewed as healthcare expenditure. It is an investment in productivity, sustainability and societal wellbeing.
Supporting More Consistent Access across Europe
To realise the promise of innovation, healthcare systems have an opportunity to translate scientific progress into more timely and consistent patient benefit.
Across Europe, differences in diagnosis, referral pathways and reimbursement frameworks are shaping access to specialist expertise, innovative therapies and coordinated care.9, 10
The result is that what science now makes possible is not yet fully reflected in patients’ day-to-day life.
In gMG in particular, we are seeing that supporting more timely and accurate diagnosis often depends on greater disease awareness, strong referral networks and access to specialist expertise.
At the same time, appraisal and reimbursement models have an opportunity to better reflect the long-term value of effective rare disease management, from improved patient outcomes to workforce participation and lower healthcare resource utilisation over time.
Furthermore, continuing to keep patients central to decision-making remains essential if these principles are to translate into real improvements in everyday outcomes.
From Scientific Progress to Better Patient Outcomes
Looking ahead, the impact of progress in gMG care will depend on taking a broader, long-term view. This includes supporting earlier diagnosis, stronger referral pathways and more consistent access to care, while embedding rare disease management more fully within wider health system planning. While rare diseases affect relatively small populations individually, they also reflect Europe’s wider capacity to translate scientific progress into societal and economic value. Getting this right can improve long-term outcomes for people living with gMG while also supporting more resilient, sustainable and productive societies.
Agata Schubert, Market Access Lead Immunology Europe, Middle East and Africa, Johnson & Johnson
References:
[1] Chen J, et al. Incidence, mortality, and economic burden of myasthenia gravis in China: A nationwide population-based study. The Lancet Regional Health – Western Pacific, 2020; 5.
[2] Law N, et al. The Lived Experience of Myasthenia Gravis: A Patient-Led Analysis. Neurol Ther (2021). 10:1103–1125.
[3] Cleveland Clinic. Myasthenia Gravis: Treatment & Symptoms. Available from: https://my.clevelandclinic.org/health/diseases/17252-myasthenia-gravis-mg. Last accessed: June 2026
[4] Dewilde S, et al. The Burden Patients with Myasthenia Gravis Experience in Terms of Breathing, Fatigue, Sleep, Mental Health, Discomfort and Usual Activities in Comparison to the General Population. Adv Ther. Jan 2024;41(1):271-291.
[5] Dewilde S, et al. Patient-reported burden of myasthenia gravis: baseline results of the international prospective, observational, longitudinal real-world digital study MyRealWorld-MG. BMJ Open. 2023;13(1):e066445.
[6] Vissing J, et al. Epidemiology of myasthenia gravis in Denmark, Finland and Sweden: a population-based observational study. J Neurol Neurosurg Psychiatry. Sep 17 2024;95(10):919-926.
[7] Attarian S, et al. Tracking myasthenia gravis severity over time: Insights from the French health insurance claims database. Eur J Neurol. Jan 2025;32(1):e16518. doi:10.1111/ene.16518
[8] Alhaidar M, et al. Current Treatment of Myasthenia Gravis. Journal of Clinical Medicine (2022). 11, 1597.
[9] Slioui A, et al. Toward European harmonization of national myasthenia gravis registries: modified Delphi procedure-based expert consensus on collectable data. Orphanet J Rare Dis. 2025. 20(115).
[10] Cortés-Vicente E, et al. The impact of diagnosis delay on European patients with generalised myasthenia gravis. Ann Clin Transl Neurol. 2024; 11: 2254-2267.
[11] Ryner Lai. Investigating the Effects of a Delayed Diagnosis in Myasthenia Gravis. Rare Disease Advisor. Available from: https://www.rarediseaseadvisor.com/insights/effects-delayed-diagnosis-myasthenia-gravis/
[12] Guastafierro E, et al. Employment in Myasthenia Gravis: A Systematic Literature Review and Meta-Analysis. Neuroepidemiology. 2020; 54 (4): 304–312.
[13] Dewilde S, et al. A cost analysis of reductions in work productivity for MG patients and their caregivers by symptom severity. Front. Public Health. 2025; 13:1538789
[14] Engebretsen I, et al. The epidemiology and societal costs of myasthenia gravis in Norway: A non-interventional study using national registry data. Eur J Neurol. May 2024;31(5):e16233.
[15] Andrea Lobo. Having MG significantly hinders patients’ ability to work, study finds. Myasthenia Gravis News. Available from: https://myastheniagravisnews.com/news/worse-mg-significantly-hinders-patients-work-ability-study-find Last accessed: June 2026
[16] Dewilde S, et al. Caregiving burden among caregivers of people with myasthenia gravis. Orphanet J Rare Dis. 2025; 9;20(1):311.
[17] van Enkhuizen J, et al. A retrospective observational study on characteristics, treatment patterns, and healthcare resource use of patients with myasthenia gravis in England. Ther Adv Neurol Disord. 2024 Apr 16;17.
[18] Brain Council. Rethinking Myathenia Gravis: Advocacy Paper. Available from: https://www.braincouncil.eu/wp-content/uploads/2026/02/Rethinking-MG-Advocacy-Paper-3.pdf. Last accessed: June 2026
Source:
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