H.E. Mr. Vitavas Srivihok, Ambassador and Permanent Representative of Thailand to the United Nations

Video Message at the RDI Rare Disease Day Event 2021

“Why a UN Resolution and Why Now”

Thursday 4 March 2021, 8.00-10.00 hrs., Virtual Platform

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Excellencies,

Distinguished delegates,

Ladies and gentlemen,

I would like to thank the organizers of today’s event, Rare Diseases International and partners, for highlighting the important issue of rare diseases at the UN community, and for giving me this opportunity to add Thailand’s voice to the conversation.

The last time I spoke on Rare Disease Day was in 2019, when I was co-facilitating the negotiations of the political declaration of the High-level Meeting on Universal Health Coverage. At that time, no one could have imagined how a pandemic would change the way of lives of every person around the world. The COVID-19 pandemic has reminded us once again on the need for countries to invest in strong, resilient and agile health systems.

Under the concept of UHC, Thailand believes that all people must have access to health services, medicines and treatment, without discrimination and without exposing them to financial hardships. People diagnosed with rare diseases face difficulty even in accessing treatment and have to bear the high costs of medicines, with the exact reason of these treatments and medicines being so rare. We need to pay more attention to address the lack of knowledge and expertise and the absence of disaggregated data on rare diseases, while fostering research and innovation in rare diseases.

In October 2019, Thailand added the initial 24 rare but severe diseases of inherited metabolic disorders to our UHC scheme. The government budget has been allocated to cover the costs of treatment and medication for patients with these 24 diseases.

A Committee on Rare Diseases was also established under the National Health Security Office to develop measures to address challenges of managing rare diseases such as coming up with a definition of “rare diseases” under domestic policies and laws, improvement of referral systems and data sharing systems, and building the capacity of medical personnel and institutions.

For the next step, Thailand is working on expanding the UHC scheme to screen newborn children for inherited metabolic disorders all over the country to be able to provide them with timely treatment.

Achieving UHC and leaving no one behind – including those with rare diseases – is a much broader agenda than health alone. It addresses the structural challenges of inequalities, discrimination and social development as a whole. We also believe that governments must join hands with civil society and other stakeholders in making this agenda a reality, as we all have a part to contribute in this effort, to genuinely leave no one behind.

With this, Thailand commends the initiative to propose a resolution on rare diseases at the United Nations in New York and looks forward to working with you all in the process to adopt this important resolution in the coming months.

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