About 6 million patients living with rare diseases in Vietnam

Deputy Minister of Health Tran Van Thuan speaks at the symposium held in Hanoi on February 29. (Photo: VNA)

Hanoi (VNA) – Health records revealed that Vietnam is home to about 100
rare diseases and around 6 million patients, heard a symposium held by the
in Hanoi on February 29.

Of the rare diseases in the Southeast Asian nation,
58% are found among children, of whom 30% die before they reach the age of
five.  

Statistics also showed that 300 million people around
the world are living with one of 6,000 identified rare diseases, of which only
5% have a Food and Drug Administration (FDA)-approved drug.

Besides, treatment costs for the remain high
and unaffordable to most of the patients, if there is no financial support from the state or organisations and the society, especially for prolonged treatment.

In Vietnam, patients find it hard to access
treatment methods due to restricted health insurance coverage for the rare
diseases, and some drugs yet to be approved in the country.

Deputy Minister of Health Tran Van Thuan said the Ministry of Health has put in place a number of policies and solutions to better manage the rare diseases. These include forming a task force in 2014, establishing an advisory
council on rare disease management, and participating relevant forums within
the Asia-Pacific Economic Cooperation (APEC) forum and the World Health
Organisation (WHO).

To deal with challenges to rare disease treatment
and management, he suggested the engagement of the entire political system and
society, which has proved effective in many countries in the world.

Apart from policy-making, the enforcement of policies plays
a crucial role, requiring diverse resources, including international
cooperation, the official said, speaking highly of the support from
international organisations and pharmaceutical firms like Takeda, Sanofi,
Novartis and Roche over the past time.

On this occasion, the Department of Medical Service
Administration under the signed a memorandum of
understanding on cooperation with the four pharmaceutical firms, aiming to improve the quality
of rare disease management and treatment in Vietnam.

Under the MoU, the relevant sides will establish a group of
experts to supervise guideline implementation at hospitals, coordinate to
review and update the ministry’s standard treatment guidelines, devise drug management
policies, and support the building of national database on drugs for rare
diseases, among other activities./.