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New SMA Tracker Reveals Gaps in Access for People Living with SMA in Europe


03 Sep 2021


Health & Consumers
  • Access to standard of care remains an issue for people living with Spinal Muscular Atrophy (SMA) in Europe
  • In collaboration with SMA Europe, Biogen has launched the SMA Policy & Access Tracker during SMA Awareness Month to highlight the issue of inequitable access to standard of care across Europe
  • The initiative includes an interactive map and policy recommendations on access to care options for people living with SMA

Baar – 30 August 2021Biogen Inc. today announced the launch of the Spinal Muscular Atrophy (SMA) Policy and Access Tracker during SMA Awareness Month with the goal to better understand gaps in access to standard of care for people living with SMA. Developed in collaboration with SMA Europe, the initiative includes a dedicated website featuring an interactive map showing key policy and access areas that impact the life of SMA patients across 23 European countries, and a white paper proposing policy recommendations to tackle existing challenges.

SMA is a rare, genetic, neuromuscular disease affecting approximately one in 3,900–16,000 live births in Europe.[i] While three treatments are available in Europe, many patients are still unable to access them and the care they need,[ii] so more needs to be done to ensure no patient is left behind. The ‘SMA Policy & Access Tracker’ and accompanying white paper ‘Assessing the policy and access environment across European countries for SMA patients’ have been developed to help address these needs.

These tools offer a comparative assessment of several key policy and access areas that impact the lives of people living with SMA across 23 European countries. The platform also provides visitors a comprehensive picture of the SMA policy and access environment across the analyzed countries. Recommendations on creating a more favorable policy environment to improve access to treatment and care are provided as well.

“The SMA Tracker shines a light on existing gaps affecting SMA patients and highlights actions decision-makers can take to address them. While people living with SMA can now benefit from different care options, a number of challenges to access these options or connected care continue to exist in various European countries,” said David Nestor, Head of Neuromuscular Disease, Europe, Canada and Partner Markets at Biogen. 

“Through its pan-European patient experience survey, SMA Europe collected evidence indicating that access to standard of care is heterogeneous throughout European countries; lack of access to existing standard of care is greatly impacting patients’ well-being. SMA Europe is therefore proud to have partnered in this important evidence-based initiative which will help overcome existing inequalities, contributing to its overall goal of improving access to diagnosis, optimal treatment and care for all people living with SMA in Europe and beyond”, noted Nicole Gusset, President of SMA Europe.

About SMA

SMA is a rare, genetic, neuromuscular disease that affects individuals of all ages. It is characterized by a loss of motor neurons in the spinal cord and lower brain stem, resulting in progressive muscle atrophy and weakness.[iii] SMA is caused by a deficiency in the production of survival motor neuron (SMN) protein due to a damaged or missing SMN1 gene, with a spectrum of disease severity.3Some individuals with SMA may never sit; some sit but never walk; and some walk but may lose that ability over time. [iv] In the absence of treatment, children with the most severe form of SMA would not be expected to reach their second birthday.3

SMA impacts approximately one in 11,000 live births in the U.S., [v] is a leading cause of genetic death among infants3and causes a range of disability in teenagers and adults.4

About Biogen

At Biogen, our mission is clear: we are pioneers in neuroscience. Biogen discovers, develops and delivers worldwide innovative therapies for people living with serious neurological and neurodegenerative diseases as well as related therapeutic adjacencies. One of the world’s first global biotechnology companies, Biogen was founded in 1978 by Charles Weissmann, Heinz Schaller, Kenneth Murray and Nobel Prize winners Walter Gilbert and Phillip Sharp. Today Biogen has the leading portfolio of medicines to treat multiple sclerosis, has introduced the first approved treatment for spinal muscular atrophy, commercializes biosimilars of advanced biologics and is focused on advancing research programs in multiple sclerosis and neuroimmunology, Alzheimer’s disease and dementia, neuromuscular disorders, movement disorders, ophthalmology, neuropsychiatry, immunology, acute neurology and neuropathic pain.

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[i]. Verhaart IE, Robertson A, Leary R, McMacken G, König K, Kirschner J, Jones CC, Cook SF, Lochmüller H. A multi-source approach to determine SMA incidence and research ready population. Journal of neurology. 2017 Jul;264(7):1465-73.

[ii]. Gusset N, Stalens C, Stumpe E, Klouvi L, Mejat A, Ouillade MC, de Lemus M. Understanding European patient expectations towards current therapeutic development in spinal muscular atrophy. Neuromuscular Disorders. 2021 May 1;31(5):419-30.

[iii]. National Institute of Neurological Disorders and Stroke, NIH. Spinal Muscular Atrophy Fact Sheet. Available at Accessed: August 2021.

[iv]. Wadman RI, Wijngaarde CA, Stam M, et al. Muscle strength and motor function throughout life in a cross‐sectional cohort of 180 patients with spinal muscular atrophy types 1c–4. European journal of neurology. 2018 Mar;25(3):512-8.

[v].  Cure SMA. About SMA. Available at Accessed: August 2021