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”.

The APEC Life Sciences Innovation Forum (LSIF) established the tripartite APEC LSIF
Rare Disease Network (RDN) with participation from government, academia, and
industry. The Rare Disease Network’s first task was to identify and compile information
on the various barriers that economies face in addressing rare diseases. Over time, the
RDN plans to continue to scale in size, diversity, and depth of engagement as the entity
shifts from its role of informing the development of an APEC strategy on rare diseases
to supporting economies in implementing the strategy. In 2018, the RDN organized a
series of Stakeholder Consultations in Australia; People’s Republic of China; Republic
of Korea; Chinese Taipei; Thailand; and Viet Nam to learn more about the local,
frontline experiences with rare disease. Hearing a diversity of perspectives and patient
experiences were the priority objectives; the RDN leadership connected with
government officials, academics, industry representatives, and other members of the
rare disease community including patients in these six (6) economies.

The information assembled through the stakeholder consultations informed the

development of a 2-day policy dialogue: the inaugural APEC Policy Dialogue on Rare
Diseases in Beijing, China in June 2018. The event facilitated candid discussion
between senior leadership from government agencies overseeing health and social
services, academic experts from universities and teaching hospitals, industry
executives, and leaders from civil society, including patient groups. At the widely-
attended dialogue, APEC economies shared best practices and policies for addressing
rare diseases and began to collaborate on the development of this APEC Action Plan
on Rare Diseases.
Asia-Pacific Economic Cooperation (APEC) Overview and
Background
The APEC forum was established in 1989 to promote economic cooperation and integration in the Pacific region. The
United States was a driving force behind APEC's creation, as a means of anchoring the United States more firmly in
the region in the post-Cold War era. APEC subsequently grew to 21 members, called "economies" because Taiwan
(called Chinese Taipei in APEC), Hong Kong, and China are equal members of APEC.

The dynamic of APEC as a ministerial-level organization changed dramatically in 1993 when the United States invited
member economies' leaders to Blake Island, instituting the annual Leaders Meetings. Leaders called for continued
reduction of trade and investment barriers, envisioning an Asia-Pacific that promotes prosperity through cooperation.

From 1994-96 APEC was devoted to formalizing the Leaders' vision for free and open trade. Leaders at Bogor,
Indonesia (1994) set the goals of reaching free trade and investment by 2010 (for developed economies) and 2020
(for developing economies). The next year they adopted the Osaka Action Agenda (OAA), a blueprint for
implementing the Bogor Goals through the three pillars of trade and investment liberalization, business facilitation,
and economic and technical cooperation. In Manila (1996), Leaders adopted the mechanisms of Individual and
Collective Action Plans to achieve the Bogor Goals.

Since 1997 APEC's focus has been on OAA implementation, but with mixed results. The 1997 targeted-sector
approach to reducing trade barriers (Early Voluntary Sectoral Liberalization, or EVSL) has produced some gains but
has remained controversial. In 1998-99, APEC helped Asian economies "stay the course" of reform during and just
after the Asian Financial Crisis, by promoting financial stability and reducing vulnerabilities to crisis through structural
reforms and sound economic policies. However, not all viewed APEC's response as timely or effective. In 1999,
APEC made efforts at Auckland to reinvigorate its role in multilateral trade liberalization by issuing a strong statement
on the WTO. The subsequent failure to launch a new WTO Round at Seattle, however, has led to questions about
APEC's ability to move forward on trade and investment liberalization. In 2000 under the Brunei chair, APEC focused
on information technology and called for a tripling of Internet access by 2005. In its "Action Agenda for the New
Economy," Leaders pledged a mix of market-based policies and capacity building actions to help transform the region
through greater development and use of information technology.

APEC developing economies believe that liberalization has been over-emphasized in the APEC agenda. While still
committed to the Bogor Goals, developing members want economic and technical cooperation, including human
resource development and capacity building, reinforced as an equal pillar in the APEC agenda. Organizationally,
APEC has approximately 16 special committees and working groups, whose work is overseen by Senior Officials. In
1995, APEC established a business advisory body, called the APEC Business Advisory Council (ABAC), which
consists of three business executives from each member economy. The U.S. ABAC representatives are Paul Song,
Chairman of Aris Corporation; Ernest Micek, former Chairman of Cargill; and Sy Sternberg, Chairman of New York
Life Insurance Company. With Mexico, Thailand, Chile and Korea lined up to chair APEC through 2005, the U.S. and
like-minded economies will face a continuing challenge of keeping APEC's liberalization agenda on track while
addressing technical cooperation needs.