This article is part of our special report Life with SMA: challenges and solutions.
Social rights and better inclusion in society are the areas where people living with Spinal Muscular Atrophy (SMA) need more improvements, Greek EU lawmaker Stelios Kympouropoulos told EURACTIV.
Spinal Muscular Atrophy (SMA) is a rare genetic neuromuscular disease that affects the central nervous system, peripheral nervous system, and voluntary muscle movement.
Although access to treatment is essential, barriers that SMA patients face living in their communities remain their main challenge.
“Having good health is important but if someone is being excluded from society, that person’s living conditions would be terrible,” the Christian Democrat lawmaker said in an interview.
One of his political goals, Kympouropoulos added, is to secure and embrace the right of independent living for all European citizens.
“Most SMA patients live with permanent and severe physical impairments, which means that apart from the treatment for SMA, we also need a network of services, like every physically impaired person,” he said.
On a European level, the EU’s Strategy for the rights of persons with disabilities 2021-2030, adopted in March, sets the foundations for the implementation of the UN Convention on the Rights of Persons with Disabilities.
According to Kympouropoulos, the strategy will lead to improvements in social rights areas.
Recognising that people with disabilities have a higher risk of poverty and social exclusion, the strategy aims to ensure that all persons with disabilities have equal opportunities and equal access to participate in society.
In particular, people with disabilities should be able to decide where, how and with whom they live and no longer experience discrimination.
Treatment at an early age is key
SMA is typically diagnosed in children and causes muscles to weaken and deteriorate. This can impact essential developmental milestones, as well as everyday activities such as walking and eating.
“The fact that SMA affects newborns, and all three treatments have a higher efficacy the sooner they are administered, or even pre-symptomatically, makes the need for newborn screening urgent,” Kympouropoulos said.
While there is no cure, treatment and support can manage symptoms and help people enjoy an optimum quality of life.
The lawmaker said that the EU offers mechanisms to the member states in order to harmonise their health care systems and exchange good practices.
“Each member state can adopt the newborn screening for SMA and make the best of the available treatments,” he added.
Disparities across the bloc
For Kympouropoulos, there are plenty of dissimilarities across the EU concerning the lives of disabled persons. “Thus I believe that each member state focuses on the most problematic areas,” he said.
“For example, a few days ago, the Greek parliament voted for the right of disabled people to personal assistance, a law that will have a huge positive impact on the lives of SMA patients as well,” he said.
He added that Germany is leading the way in the areas of healthcare system preparedness, diagnosis, access pathways, access to treatment and care, as well as in participation of patients’ organisations in the policymaking.
The German leadership was highlighted in an evidence-based study in 23 European countries that have conducted a comparative assessment of the policy and access landscape for SMA patients.
Kympouropoulos emphasised the importance of awareness about disabled persons in general. “Where SMA patients are included in their societies, people are also aware of SMA as a medical condition, because they deal with SMA patients in their daily routine,” he said.
“I strongly believe that raising awareness for a medical issue without fighting for inclusion would lead to higher omission,” Kympouropoulos concluded.
[Edited by Zoran Radosavljevic]