Adults with SMA are falling through care gaps - the fix is well within our grasp

SMA is a severe, progressive neuromuscular disease. Thanks to transformative changes in multidisciplinary care and disease-modifying therapeutics (DMTs), the outlook for many of those living with SMA is improving. Roche has been working with the SMA community for over a decade and we’re proud to be playing our part in this positive trajectory.?

As many cases of SMA are diagnosed and treated from childhood, paediatrics has been the main driver and focus of important shifts in national standards of SMA care. It is absolutely right that children continue to benefit from such advances.?

Today, half of those living with SMA in Europe are adults. Concerns are growing that this important group is being neglected. Care standards and pathways need to urgently catch up.?

To improve adult care in SMA, a definitive picture of the needs and gaps is required. SMA Europe, Roche and an expert advisory group of patients and medical professionals set out to comprehensively benchmark adult care across a broad range of indicators in 22 countries.?

Our research uncovered a variety of challenges. The transition from paediatric to adult care can be highly complex and challenging. Multifaceted care is required for a person with SMA. When care coordination and scheduling is inefficient, adults miss out on care, spend a disproportionate amount of time in healthcare settings or worse, are lost to the medical system. Access to DMTs is not consistent - some countries’ eligibility criteria are more restrictive than the EMA approved indication, making it difficult for adults to get the treatment they need. Adult-specific standards of care are available in only one country, and financial support for independent living varies greatly across Europe.

Fortunately, these issues are all highly solvable. The report’s authors include a plethora of practical recommendations, grounded in experience and expertise, for clinicians, researchers, policy makers and healthcare agencies to consider, consult, join forces and push for implementation.

Although the challenges are great, reading through the report, I hope you will be as encouraged as I was by many shining examples of best practice adult care in SMA being implemented by healthcare professionals, policy makers and patient groups around Europe.?

The number of adults living with SMA is increasing. With 22 comprehensive country-level reports available, we hope this new body of evidence will provide healthcare leaders with the information, inspiration, and tools they need to provide everyone living with SMA the care they deserve.

To learn more, please visit SMA Europe’s OdySMA website: https://odysma.sma-europe.eu/adult-care . The reports have been made possible with funding support from Roche.