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Spain’s ELA Law Stalled by Funding Gap as Regions Ramp Up Patient Support

New drug approval offers hope for a small genetic subgroup despite the law’s stalled implementation

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Los casos de ELA podrían aumentar hasta un 40% en los próximos 25 años
Más de medio millar de personas participan en la Marcha solidaria contra la ELA
Miguel Ángel Roldán, un paciente cordobés de ELA

Overview

  • The national ELA law passed in October 2024 remains unfunded, delaying the release of €200 million earmarked for patient assistance.
  • Hundreds of families and patients marched in Toledo and other cities to demand swift budget approval after more than 600 individuals died without receiving promised benefits.
  • Last month’s Health Ministry decision greenlit Tofersen for patients with SOD1 gene mutations, covering roughly 2 percent of ELA cases.
  • Regional governments in Valencia, Andalusia and Catalonia have launched emergency aid lines, set up multidisciplinary care units and allocated targeted budgets such as Valencia’s €700,000 fund.
  • Psychological support hubs and peer groups are expanding to address the disease’s emotional toll and help patients maintain their quality of life.