Spinal muscular atrophy patients consider leaving Latvia over lack of medicine funding
Several adult patients in Latvia with spinal muscular atrophy are weighing emigration because the state does not fund disease-slowing medication for their age group. Doctors say most European countries, including neighboring Lithuania and Estonia, do provide the treatment.
A number of people in Latvia diagnosed with spinal muscular atrophy — a severe genetic condition affecting muscle function — say they are seriously considering leaving the country. The reason is that Latvia does not cover the cost of medication for adult patients that can significantly slow the disease's progression.
Among those weighing a move abroad is Gunta Anča, head of the patient organization "Sustento." She has not given up hope, however, that authorities will listen to patients' concerns and find a way to let them stay in Latvia while still receiving the treatment they need.
Neighboring countries already provide access
Doctors point out that most European Union member states fund this therapy for their patients. Both of Latvia's Baltic neighbors, Lithuania and Estonia, are cited as examples where adult spinal muscular atrophy patients can receive disease-slowing treatment through state funding.
A family's experience abroad
Latvian Radio also spoke with a Latvian family that has lived in the United Kingdom for some time. Their son, who has spinal muscular atrophy, regularly receives the essential medication there — treatment that would not be funded for him in Latvia.
The situation is forcing patients and their families to weigh staying in Latvia without access to treatment against relocating to countries where the healthcare system takes a different approach to the disease.
