On Wednesday morning, 5 February 2025, Knowledge Ecology International (KEI) delivered the following statement on the rare diseases decision under agenda item 6 on Universal Health Coverage.
Item 6 Universal health coverage
Knowledge Ecology International
A challenge for the rare diseases decision is the cost of its implementation in a time of severe fiscal challenges. One inexpensive measure is to circulate a survey among member states on the compliance with norms in the 2019 WHO transparency resolution (WHA 72.8), asking about progress in collecting and publishing data on units of medicines sold, as well as prices, sales revenue, costs of trials and subsidies related to R&D for specific products, all essential in evaluating on extent of access disparities and the impact on health care budgets for rare diseases.
Another measure is solicit and publish proposals from the public, at no cost to the WHO, on the challenges and opportunities to delink drug development incentives from high prices and monopolies.