Patients consider leaving Latvia over lack of SMA drug coverage

Several Latvian patients with spinal muscular atrophy are considering moving to other European countries because the state does not cover medicines for adults that significantly slow the progression of the severe genetic disease, LSM reported. The medicines are covered for adults in Lithuania and Estonia, while Latvia currently covers them only for children.

Gunta Anča, head of Sustento, an organisation representing people with special needs, is also considering leaving Latvia, although she still hopes that officials will listen to patients. Doctors say most European countries provide the medicines.

Spinal muscular atrophy gradually weakens the muscles and affects a person’s ability to move, breathe and live independently. Anča said the muscles do not receive the nourishment they need and therefore gradually become weaker.

Anča, 58, has had a disability since childhood and uses a wheelchair. She has led Sustento for 24 years and was recently elected president of the European Disability Forum. An activist since secondary school, she has represented people with disabilities in Latvia and Europe but said she usually avoids speaking publicly about her own diagnosis and health.

Latvian Radio also spoke to a Latvian family that has lived in the United Kingdom for a long time. Their son receives the medicines there and works in the music business. Latvia’s NVD continues to work on a solution for providing the medicines to adults.