Latvian patients with rare muscular disease consider leaving the country
Several Latvian patients with spinal muscular atrophy are considering moving to other European countries because the state does not cover the cost of disease-slowing medication for adults with the condition. Sustento head Gunta Anča is also weighing emigration but still hopes patients' concerns will be heard.
Several people in Latvia diagnosed with spinal muscular atrophy, a severe genetic disease, are seriously considering relocating to another European country. The reason is that adult patients with this diagnosis are not reimbursed by the Latvian state for medication that can significantly slow the disease's progression.
Gunta Anča, head of the patient organization Sustento, says she too is thinking about leaving Latvia. However, she still hopes that authorities will listen to patients' needs and that the situation could change.
The situation elsewhere in Europe
Doctors point out that in most European countries these medications are available to patients and covered by state or insurance funds. Neighboring Lithuania and Estonia are cited as examples where such treatment is already accessible.
A family's experience in the UK
Latvian Radio spoke with a Latvian family that has long lived in the United Kingdom, where their son, who has the condition, receives the medication he needs. In Latvia, adult patients currently cannot get this treatment funded by the state.
Spinal muscular atrophy is a progressive disease affecting nerve cells in the spinal cord, gradually leading to muscle weakness. Without proper treatment, it can severely limit patients' ability to move and carry out daily activities over time. The case highlights differences in healthcare funding for rare diseases among the Baltic states.
