The government will fund medications and specialized foods for individuals over 18 with rare diseases, but eligibility hinges on starting treatment before adulthood. These changes, proposed by lawmakers from four parliamentary factions, are criticized by the non-governmental organization “Community Bridges Association” for being discriminatory.

Under the proposed changes, individuals over 18 years old with rare diseases who began treatment before reaching adulthood will have their therapy costs covered by the state until completion. This move, aimed at preventing interruptions in treatment, has allocated BGN 8.4 million for 2024 to cover the therapy of 25 patients transitioning into adulthood this year.

Antoaneta Toncheva from the organization “Community Bridges Association” highlighted that individuals who did not commence treatment before adulthood would not benefit from the state-funded coverage, potentially leaving them without access to crucial medications and medical foods.

In response to these concerns, “Community Bridges Association” proposes an alternative text that would ensure treatment payment for individuals over 18, irrespective of when their illness began. This stance advocates for equitable access to healthcare for all rare disease patients, regardless of the timing of their diagnosis.

The implications of these amendments extend beyond rare diseases, as they also affect individuals with rare forms of common diseases. Previously, these individuals received funded treatment until adulthood or until the completion of therapy post-18. The proposed changes raise questions about access to essential healthcare for this group as well.

The timing of these amendments, introduced on the eve of early parliamentary elections, adds a political dimension to the debate. Importantly, the amendments were submitted by representatives from various political parties, including GERB, We Continue the Change-Democratic Bulgaria (WCC-DB), Movement for Rights and Freedoms (DPS), and There is Such a People (TISP), indicating a cross-party effort to address the issue.

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