Stakeholders seek to enhance quality of rare disease treatment in Vietnam

Vietnam’s doctors and experts in the field of rare diseases gathered at the “Advisory Council and Experts Meeting on Rare Disease Management in Vietnam” on December 2

The meeting reviewed the progress of the APEC Rare Disease Action Plan since its implementation across the region, including Vietnam. In line with this action plan, drafts and discussions of the council on the definition and list of rare diseases, as well as presentations on some rare disease diagnosis, treatment guidelines, and management have been developed.

Significant headway was made since 2018, when the Medical Services Administration (MSA) and Takeda Vietnam signed the MoU on “Improving diagnosis, treatment and management of specific rare diseases in Vietnam” in 2018-2023. Since then, the MSA affirmed that Vietnam has made great strides in diagnosing, treatment and management of a number of rare diseases.

Dr. Nguyen Trong Khoa, Deputy Director of the MSA, said: “Currently in Vietnam, there are specific therapies and medications for certain rare diseases that help improve the effectiveness of treatment and life quality for patients. The recent journey shows that the expansion of cooperation with leading names in this field has brought positive change to patients, as well as paved the way for patients and health professionals (HCPs) to access advanced treatment methods, enhancing the quality for rare diseases treatment in Vietnam.”

According to Dr. Vu Chi Dung, director of Center for Rare Disease and Newborn Screening, National Children’s Hospital, in recent years, diagnosis and treatment of rare diseases around the world and in Vietnam have made considerable progress. The support from partners over the years has helped the hospital to strengthen awareness and understanding of how to treat patients before severe symptoms appear and mitigate the risk of death. Specifically, Takeda has been supporting 10 pediatric patients with MPSII on clinical trial phase 4 at our hospital.

Ms. Katharina Geppert, Country Manager, Takeda Vietnam, delivered a speech at the “Advisory Council and Experts Meeting on Rare Disease Management in Vietnam” held on December 2

Katharina Geppert, country manager, Takeda Vietnam, emphasised, “Increasing access to innovative medicines for rare diseases is challenging and needs collective action. It must be approached in a sustainable and targeted way, to strengthen and transform healthcare systems, at every stage of the patient journey – from awareness and diagnosis to treatment and ongoing patient support.”

"Partnering with the Ministry of Health on the creation of patient-centric provisions for the management of rare diseases is another aspect of our local Access to Medicines strategy and innovative treatment solutions. Since 2018, Takeda has been contributing to the improvement of diagnosis and treatment for patients with haemophilia and primary immune deficiency – two of the most prevalent rare diseases in the country. On the other hand, we continue to execute our long-term strategies that empower breakthrough treatments, improving patients’ life quality and supporting Vietnam’s healthcare system,” she added.

According to the World Health Organisation (WHO), it is estimated that one in 15 people is diagnosed with a rare disease, and there are around six million rare-disease patients in Vietnam. While in Vietnam, it is reported that there are approximately 100 rare diseases found in the community, according to the Vietnam National Children’s Hospital.

The MoU will address two particular rare diseases which are haemophilia (estimated to afflict over 6,000 people in Vietnam, but only 3,600 patients have been identified); and primary immunodeficiency (PID) (afflicting the prognosis of these patients). After succeeding with haemophilia and PID, the MoU will be extended to more rare diseases for research, training, and care programmes in order to improve the lives of more patients.

Takeda Pharmaceutical Co., Ltd. is a global, values-based, research and development (R&D)-driven biopharmaceutical leader headquartered in Japan. Takeda focuses its R&D efforts on four therapeutic areas: oncology, rare genetics and haematology, neuroscience, and gastroenterology.

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