Hong Kong: SMA Patients Fight for Life-Saving Therapies
Vienna, April 19, 2026 – In Hong Kong, patients with spinal muscular atrophy (SMA) are calling on the government to also grant adults access to subsidized injection therapies. At a press conference on Sunday, affected individuals reported how their health conditions deteriorated dramatically after reaching adulthood – because they simply could no longer afford the treatment.
Lui Man-lam, President of the Hong Kong Neuro-Muscular Disease Association, sharply criticized the existing regulations. Although subsidies for oral medications were introduced at the beginning of this year for patients aged 25 and above, more effective injection therapies remain unavailable to adult patients. This contradiction is tantamount to a slow death sentence for many affected individuals.
A disease that knows no borders
Spinal muscular atrophy is a rare genetic disorder that leads to the progressive breakdown of muscles. Around 300,000 people worldwide are affected. Modern therapies like nusinersen (Spinraza) or gene therapies like Zolgensma can significantly slow the course of the disease – provided patients have access. In Europe, a single dose of Zolgensma costs around two million euros, while Spinraza amounts to about 75,000 euros per injection, with multiple doses needed annually.
In Hong Kong, these therapies for children are state-funded. Adults, however, fall through the cracks. A system that makes no medical sense: The illness doesn't disappear on one's 18th birthday. It progresses.
Economic reality versus medical necessity
The Hong Kong government argues with limited resources and prioritization. Critics see this as a short-term calculation that will become more expensive in the long run. Untreated patients require intensive care earlier, lose their ability to work, and place a greater burden on the social system than those who receive early and continuous treatment.
For European observers, the case of Hong Kong is not an isolated phenomenon. In Austria and Germany, too, patient organizations regularly fight for the cost coverage of expensive therapies for rare diseases. The question of who receives access to life-saving medications and who does not is increasingly becoming a fundamental sociopolitical decision.
The pharmaceutical industry between innovation and pricing policy
The high costs of SMA therapies also shed light on the pharmaceutical industry's pricing. Companies like Novartis (Zolgensma) and Biogen (Spinraza) justify their prices with enormous research costs and small patient numbers. Health economists counter: for lifelong therapies, even seemingly cheaper options add up to astronomical amounts.
Hong Kong patients are thus on the front lines of a global conflict between medical progress, economic interests, and the fundamental right to health. Their demand for equal treatment is more than a local concern – it raises the question of what a human life is worth when it comes to the balance sheet.
The Two Sides of Power
Hong Kong likes to present itself as a bridge between East and West, a modern financial center with Western standards. However, a different reality emerges in healthcare: those who grow up and remain sick lose the protection of the system. The power of bureaucracy decides quality of life and life expectancy – while the pharmaceutical industry profits from both sides. YANUS continues to follow this story.
