When Lassi was born in Finland in 1987 and diagnosed with spinal muscular atrophy (SMA), the expectations placed on his future were narrow. Like many people with SMA of his generation, he grew up before disease-modifying treatments, at a time when survival, adulthood and participation were too often imagined in limited terms. Nearly four decades later, Lassi is still here, not only living with SMA, but helping to reshape how Finland and Europe understand access, adulthood and justice in SMA care.

SMA did not define Lassi’s childhood, but since early adulthood, independence, work, relationships and the future itself became harder to navigate. As an adult, SMA suddenly became more than a mere medical fact. It became a condition that shaped choices, timing, and possibility. Still, Lassi studied, worked, built a life. Over time, personal experience turned into public responsibility, and Lassi became involved in advocacy.

The true cost of medicines is rarely visible to those whose lives depend on them. Price negotiations between companies and public authorities are often confidential, and reimbursement decisions are shaped through highly technical processes that can feel distant from the lives at stake. In SMA, the figures can be striking. Yet the ethics of reimbursement choices are equally striking: what does a healthcare system owe to people whose needs are rare, complex and costly, but whose lives are no less valuable? For adults with SMA, this question is not abstract. It is measured in years. It is felt in bodies.

Bureaucratic complexity added on to the issue of cost. Finland's reimbursement system involves different public bodies assessing different medicines, and patient organisations are not always systematically invited to weigh in on reimbursement policies. But administrative time and bodily time do not move at the same pace. While institutions wait, bodies do not.

In April 2026, after years of advocacy, public discussion, and efforts to raise awareness among decision-makers, a positive decision to expand reimbursement to adults living with SMA for one of the existing disease-modifying treatments finally became a reality in Finland.

Lassi is proud of this achievement. It is the result of persistence, collective work and the refusal of adults with SMA to disappear from the conversation. Yet, local advocates are left with the uneasy feeling that, despite their efforts, the breakthrough only came because Finland had become increasingly isolated among comparable countries. Yet, the ethical case had existed for years. The lives had existed for years. The urgency had existed for years.

This revealed a painful paradox. The number of untreated adults with SMA in Finland was small enough to be overlooked politically, yet their exclusion carried enormous human consequences. Rare disease communities often live with this contradiction. Small numbers can make a policy issue seem administratively manageable, but politically invisible. The people affected may be few, but the impact on each life is profound.