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Rare Diseases Q3 2023

Ensuring universal health coverage works for every Person Living with a Rare Disease

lab researcher
lab researcher
iStock / Getty Images Plus / Morakot Kawinchan

Alexandra Heumber Perry

Chief Executive Officer, RDI

    Dolores Cviticanin

    Public Affairs Manager, RDI

      Ensuring universal health coverage (UHC) for Persons Living With a Rare Disease (PLWRD) means that this often-neglected community has access to the healthcare services they need, with less or no out-of-pocket expenses.

      For the more than 300 million PLWRD worldwide, the time to act on the commitment expressed in the Political Declaration on Universal Health Coverage is now.

      Three dimensions of UHC in rare disease

      UHC ensures everyone can access the quality essential health services they need without being exposed to financial hardship. United Nations (UN) Member States need to consider the three dimensions of UHC when improving health service coverage for PLWRD:

      1. Population: Population coverage lags far behind in most countries. Remedying this starts by collecting data to understand the barriers that are impacting equitable coverage.
      2. Services: PLWRD have complex needs, which national authorities must accommodate when developing their UHC essential health service package to include the services that are indispensable to this vulnerable population.
      3. Direct costs: PLWRD often experience financial difficulties caused by out-of-pocket care expenses. They may also have significant additional costs, including transport and rehabilitation. This greater financial burden leads to the impoverishment of the rare disease population. National authorities need to consider those dimensions as well.

      UHC ensures everyone can access the
      quality essential health services they need
      without being exposed to financial hardship.

      Blueprint for leaving no one behind

      Rare Diseases International (RDI) held a ‘Formal Side-Event to the High-Level Meetings on UHC’ on 21 September at the UN Headquarters, organised with the Spanish and Swedish Permanent Missions to the UN; NGO Committee for Rare Diseases; EURORDIS-Rare Diseases Europe; Agrenska Foundation; and Federación Española de Enfermedades Raras (FEDER). The global community of PLWRD encouraged Member States to implement the Political Declaration on Universal Health Coverage and the UN Resolution on ‘Addressing the challenges of persons living with a rare disease and their families.’

      Policymakers can start by supporting the identification of rare diseases, and their better classification and codification, by strengthening healthcare systems, integrating rare diseases into their UHC plan and facilitating access to affordable treatments for rare diseases. This way, the 2030 Agenda — particularly Sustainable Development Goal 3 on good health and wellbeing and its mission ‘to leave no one behind’ — can be catalysed and achieved.

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