6 million Vietnamese people affected by rare diseases

In Vietnam, 1 in 15 people are affected by rare diseases, equivalent to 6 million people affected by rare diseases. However, diagnosis and treatment of the disease still face many difficulties, especially the high cost of treatment.

Overview of the seminar "National action plan on rare disease management 2025-2026" - Photo: D.LIEU

On September 16 in Hanoi, the Ministry of Health coordinated with the Vietnam Medical Association to organize a scientific seminar to deploy the "National Action Plan on Rare Disease Management 2025-2026".

Cataloging rare diseases for effective management

According to experts, there is currently no unified definition of rare diseases, which is basically based on the number of people affected. Of which, 80% are congenital diseases, the rest are metabolic, hematological, immune, neurological and cancer disorders.

According to statistics, there are currently more than 300 million patients in the world suffering from about 6,000 rare diseases, accounting for 3.5-5.9% of the world's population.

In Vietnam, 1 in 15 people are affected by rare diseases, equivalent to 6 million people affected by rare diseases. However, the diagnosis and treatment of rare diseases still face many difficulties due to lack of information, lack of experts and lack of effective treatment methods.

Many people with rare diseases face late diagnosis, inadequate treatment, and high treatment costs.

Sharing at the seminar, Mr. Ha Anh Duc - Director of the Department of Medical Examination and Treatment Management, Ministry of Health - said that with common diseases, diagnosis and treatment are more convenient thanks to many drugs and resources. However, with rare diseases, the challenge is much greater, requiring close coordination between management agencies, professionals and the international community.

In order to care for people with rare diseases, the Ministry of Health recently issued the "National Action Plan on Rare Disease Management for the period 2025-2026" and launched the Steering Committee to strengthen the management of rare diseases in Vietnam. Prof. Dr. Tran Van Thuan, Deputy Minister of Health, is the Head of the Steering Committee to strengthen the management of rare diseases in Vietnam.

The plan sets out key contents and tasks, including perfecting institutions in the field of rare disease management such as promulgating a list of rare diseases, updating standard guidelines on diagnosis, treatment and management of some rare diseases, developing circulars to amend and update the list of rare drugs; promoting scientific research and international cooperation to support and improve capacity for management and treatment of rare diseases.

Mr. Nguyen Trong Khoa, Deputy Director of the Department of Medical Examination and Treatment Management, also affirmed the Department's determination to issue a list of rare diseases in Vietnam. The goal is to accept 30-40 rare diseases by the end of 2025, and by 2026, issue a list of rare diseases in Vietnam.

Proposal to increase health insurance coverage for rare diseases

In addition, an issue that many experts are concerned about is the health insurance payment mechanism for people with rare diseases. Dr. Nguyen Khanh Phuong, Institute of Health Strategy and Policy (Ministry of Health), informed that currently the health insurance fund only pays for a single rare drug, alglucosidase alfa, used to treat Pompe disease, with a payment rate of 100% for children under 6 years old and 30% for children over 6 years old.

According to Ms. Phuong, most people over 6 years old do not have enough conditions to pay the remaining 70%. Therefore, in addition to the need to soon develop and promulgate an official list of rare diseases in Vietnam, Ms. Phuong proposed improving the health insurance payment mechanism and expanding financial support for patients so that they can access treatment drugs.

Associate Professor, Dr. Nguyen Thi Xuyen, President of the Vietnam Medical Association, affirmed that the Vietnam Medical Association is committed to continuing to accompany the Ministry of Health and relevant agencies in implementing rare disease management activities.

"The seminar included in-depth reports, focusing on key issues such as international experience in building rare disease lists, diagnostic and treatment guidelines, and the development of specialized centers.

We hope that through this seminar, policies and action plans will be effectively implemented, contributing to improving the quality of life of people with rare diseases," Ms. Xuyen emphasized.

WILLOW

Source: https://tuoitre.vn/6-trieu-nguoi-viet-nam-bi-anh-huong-boi-benh-hiem-20250916181018672.htm