There is a vast population across all of the APEC economies that is being overlooked by the healthcare system due to the inability to either diagnose or manage rare diseases. Accordingly, no APEC Economy will be able to claim that is has successfully implemented the “Healthy Asia-Pacific 2020” initiative if it has not adequately and equitably met the needs of those with rare diseases. 

This project seeks to help APEC developing economies adopt an inclusive approach to “Healthy Asia Pacific 2020” implementation by addressing barriers to healthcare services for populations with rare diseases.  With an estimated 200 million people in the APEC region living with one of the 7,000 known rare diseases, APEC Economies cannot afford not to improve access to screening, diagnosis, appropriate medical management and support to people with rare diseases. This project will establish a tripartite task force and convene a 2-day policy dialogue to facilitate the sharing of best practices, policies, standards, and guidelines for addressing rare diseases, drawing on the experiences of developed APEC economies.  Economies will then work together to develop an APEC Rare Disease Action Plan to facilitate greater alignment of domestic policies and implementation of best practices and to provide a framework for short-term and long-term multi-sectoral collaborations to advance progress in key areas.

By addressing the barriers to healthcare services for rare diseases, APEC Economies will improve the economic and social inclusion of those affected by rare diseases, including caregivers, and ensure a more inclusive “Healthy Asia Pacific 2020”.

Background


In November 2016, APEC Leaders recognized that “health is the foundation of economic prosperity and human development” and highlighted the importance of “promoting health systems towards the achievement of Universal Health Coverage (UHC), which are resilient, sustainable, accessible and responsive to current and future needs.”  The Healthy Asia Pacific 2020 Initiative, welcomed by APEC Leaders in 2014, also calls on APEC Economies to strengthen health systems to support UHC, and in doing so, to “collaborate with stakeholders and share experiences to provide the whole population, including the poor, vulnerable and marginalized groups, with access to safe, effective, high quality and affordable primary health care.” No APEC economy will be able to claim that is has achieved APEC Leaders’ vision for health, or successfully implemented “Healthy Asia-Pacific 2020”, if it has not adequately and equitably met the needs of those with rare diseases.

There is a vast population across all of the APEC economies that is being overlooked by the healthcare system due to the inability to either diagnose or manage rare diseases. Persons with rare diseases are often trapped in a vicious cycle of vulnerability and poverty due to exclusion from health care and education systems, as well as job markets.  APEC economies cannot afford not to improve access to screening, diagnosis, appropriate medical management and support to people with rare diseases.  Rare diseases are one of the most scientifically complex health challenges of our time. There are currently 7,000 known rare diseases. According to the World Health Organization (WHO), rare diseases affect roughly one in fifteen people globally with a majority of these diseases affecting children.  An estimated 200 million people in the APEC region, and 400 million people worldwide, are living with a rare disease.  Rare diseases are often difficult to diagnose, and in many cases, few or no treatment options are available. Approximately 80% of rare diseases are caused by abnormalities in a person’s genes. Rare disease management remains immensely challenging across the region, due to high costs, limited resources, lack of scientific knowledge, and financial incentives.  The APEC economies are at vastly different stages of progress in addressing rare diseases and there is no alignment of priorities. However, APEC developed economies maintain best practices and established approaches in rare disease management that can be shared and effectively implemented in APEC developing economies. Economies typically take a similar journey in addressing rare diseases and thus there is no need to reinvent the wheel. The proposed project seeks to help APEC developing economies adopt an inclusive approach to “Healthy Asia Pacific 2020” implementation by addressing barriers to healthcare services for populations with rare diseases.

This project will first establish a tripartite (academic, government, industry) APEC LSIF Rare Disease Network to identify and collect information/data on those barriers in APEC economies.  The collected information will be synthesized and used to develop and design a 2-day policy dialogue in mid-2018.  The policy dialogue will facilitate the sharing of best practices, policies, standards, and guidelines for addressing rare diseases, drawing on the experiences of APEC developed economies.  Participating economies will then work together to develop an APEC Rare Disease Action Plan to facilitate greater alignment of domestic policies and best practices and to provide a framework for short-term and long-term regional, multi-sectoral collaborations to advance progress in key areas. By addressing the barriers to healthcare services for rare diseases, APEC economies will improve the economic and social inclusion of those affected by rare diseases including caregivers, and ensure a more inclusive “Healthy Asia Pacific 2020”. Participating APEC economies will discuss and determine an appropriate timeline for the Action Plan to be implemented.  The Project Overseer currently proposes the end of 2025 as the target date for implementation of the Action Plan.

Health Ministers and health officials recognized the importance of addressing rare diseases at the 7th APEC High-Level Meeting on Health & the Economy (HLM7) in August 2017 in Ho Chi Minh City, Viet Nam.  HLM7 “welcomed the launch of a new APEC initiative to address barriers to the diagnosis and treatment of rare diseases in the region” and “noted that such efforts will improve the economic and social inclusion of those affected by rare diseases, including caregivers, and ensure a more inclusive Healthy Asia Pacific 2020”. HLM7 also “welcomed the development of an action plan to facilitate greater alignment of domestic policies and best practices and to provide a framework for regional collaboration”.

Objectives


  1. Establish a tripartite (academic, government, industry) APEC LSIF Rare Disease Network to identify and collect information/data on barriers to healthcare services for populations with rare diseases in APEC economies;  the collected information will be synthesized and used to design and develop the 2-day policy dialogue;
  2. Convene representatives from APEC economies for a 2-day policy dialogue to facilitate the sharing of best practices, policies, standards, and guidelines for addressing rare diseases, drawing on the experiences of APEC developed economies;
  3. Develop an APEC Rare Disease Action Plan to facilitate greater alignment of domestic policies and best practices and to provide a framework for short-term and long-term regional, multi-sectoral collaborations to advance progress in key areas.

Outcomes


The Action Plan that is developed following the policy dialogue will provide a framework for addressing barriers to healthcare services for populations with rare diseases. The Action Plan will recommend specific policy actions to facilitate greater alignment of domestic policies and best practices over the short-term, medium-term, and long-term. The Action Plan will also identify specific ways that regional and multi-sectoral collaborations can support implementation of the policy actions.

Over the medium-term, the expectation is that the LSIF Rare Disease Network will continue to provide a platform for APEC economies to share best practices, policies, standards, and guidelines for addressing rare diseases. This will allow for sustainable, self-funded improvements to continue in APEC economies to support implementation of the Action Plan.