New Rare Disease Action Plan to Affect 21 Nations

The Asia-Pacific Economic Cooperation (APEC) has 21 members including the United States, China, Canada, Australia, Peru, Russia, and Thailand to name a few. They work to encourage the interdependence of the members, promote free trade, and support inclusive and sustainable practices all around. Additionally, they have their own Rare Disease Network which was formed in August of 2017. This group collaborates between governments, academic centers, and patient groups to determine what rare populations need. During APEC’s Life Sciences Innovation Forum of 2018, this network laid out a Rare Disease Action Plan. The intention of this plan is to help support an improved approach from member economies to their citizens with rare diseases.

The Plan

The plan included 10 different action steps including an improvement to healthcare systems with goals to accelerate the rate of diagnosis. It also aims to increase public awareness concerning rare conditions and better integrate technology to improve research and decision making within clinics.

The overarching goal of the plan is to increase the economic and social inclusion of citizens living with rare conditions.

The expectation is that the steps outlined in this plan will be implemented by 2025.

Basically, it was implemented under one basic premise- everyone deserves to go through life in the best health, and impositions to health can hinder many aspects of human development. APEC makes it clear that the commonality of a condition is irrelevant. If it is affecting someone’s livelihood, they deserve access to care.

Universal Health Coverage

APEC’s statement includes the words “affordable” and “quality” in regards to healthcare and they don’t believe in exceptions to this rule.

“Health is the foundation of economic prosperity and human development”

To ensure the plan is implemented correctly, APEC has explicitly stated that the plan will not be listed as achieved unless it is evident that individuals living with rare diseases in addition to those with common conditions have been accounted for.

By percentage, rare diseases don’t seem to affect many people. In the APEC region, only 6 to 8% of the population are living with a rare diagnosis. However, that equates to 200 million people who are diagnosed with one of 7,000 rare diseases.

Of those living with rare diseases in the region, 40% were misdiagnosed at least once. It’s clear this plan was needed.

Looking Forward

APEC’s plan is also special because it is collaborative. Throughout 2019, APEC leaders plan to keep open communication with nations to ensure pilot programs are progressing.

“Coming together as a healthcare industry is critical for the success of driving earlier access, diagnosis and treatment.”

This plan is great news for the rare disease community and we hope it means we’ll see changes soon in all 21 of these nations.

You can read the full outline of APEC’s Rare Disease Action Plan here.


What are your thoughts on APEC’s new Rare Disease Action Plan? Share your stories, thoughts, and hopes with the Patient Worthy community!

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