At the World Health Organization’s 74th World Health Assembly, Knowledge Ecology International delivered the following remarks on expanding access to effective treatments for cancer and rare and orphan diseases including cell and gene-based therapies on Thursday, 27 May 2021. Non-state actors are limited to one minute statements.
The disparities in access to the most effective treatments for cancer and rare diseases are severe. We have three suggestions.
- The WHO should establish an intergovernmental working group to propose actions to expand access to and affordability of effective treatments for cancer and rare and orphan diseases, including cell and gene therapies.
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WHO should provide technical assistance on the ability of member states to create exceptions to patent rights for treatments that can be classified as services, such as autologous CAR-T.
- The WHO should oversee the establishment and governance of a global registry for rare diseases that includes information on incidence, prevalence, demographic data, natural history of disease and access to treatments.