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Improving people’s access to new, innovative medicines
In terms of the availability of new medicines, Indonesia ranks the lowest among Asia-Pacific countries and members of the Group of 20, standing at only 9 percent out of 460 new medicines launched globally between 2012 and 2021.
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Rare talent: Children living with rare disorders perform a Betawi traditional dance at a shopping center in Bekasi, West Java, on Feb. 29, 2024. The event was held by Indonesia Rare Disorders (IRD) to commemorate World Rare Disease Day. (Antara/Fakhri Hermansyah)
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ast week’s commemoration of World Rare Disease Day highlights the need for stronger commitments to ensure people with uncommon disorders receive better care and prompt access to adequate treatment.
Patients with rare diseases in Indonesia constantly face challenges, from delays in diagnosis and initiation of treatment to poor access to new and innovative medicines.
According to Health Ministry data, as of December 2022, about 27 million people, or 8-10 percent of the country's population, live with rare diseases.
Globally, there are more than 7,000 rare diseases, which affect over 300 million people. About 80 percent of the diseases have a genetic basis and more than 50 percent impact children. Rare diseases manifest in various forms, including some types of cancers, autoimmune diseases, metabolism disorders and congenital abnormalities.
To make it worse, currently approved treatments are only available for up to 5 percent of the recognized rare diseases.
Innovative medication is therefore pressing to help people with rare diseases.
An innovative medicine refers to a new or improved pharmaceutical product, which offers a new approach to the prevention, diagnosis, treatment and management of diseases, according to the World Health Organization.
