Experts weigh new funding models for rare disease care

Politicians and experts are discussing new ways to fund sustainable care for people with rare diseases in Latvia, LSM reported. The proposals include creating a National Rare Disease Fund and redirecting revenue from taxes and state-owned companies.

The Friday discussion brings together representatives of the Health, Finance and Welfare ministries, members of parliament, the National Health Service, large state and private companies, insurers and patient organisations.

Proposals to be presented include a fixed profit levy on state-owned companies, targeted reallocation of excise tax or value-added tax revenue, and transfers of savings between sectoral budgets. These options would provide funding alongside the healthcare budget.

The organisers say participants will assess the proposals’ economic rationale, feasibility and any necessary legal changes, with the aim of agreeing on practical next steps to improve patients’ access to needed treatment. Sintija Bergmane, a board member of the Latvian Rare Disease Alliance, said current funding often relies on public donations rather than sufficient state support.

Based on international estimates, more than 130,000 people in Latvia could be affected by a rare disease during their lifetime, with effects also reaching their relatives and caregivers. LSM reports that Latvia ranks last in the European Union for access to innovative medicines, and that rare diseases have been a stated priority without the corresponding budget allocations.