Delegates launch a programme for establishing diagnostic methods, strengthening treatment and developing guidelines for hereditary angioedema (HAE) in Việt Nam.— Photo courtesy of the programme

HÀ NỘI — A programme establishing diagnostic methods, strengthening treatment and developing guidelines for hereditary angioedema (HAE) has been launched in Việt Nam.

The programme is funded by the ‘Project for Global Extension of Medical Technologies, Systems and Services in 2021’, conducted by the National Centre for Global Health and Medicine under Japan’s Ministry of Health, Labour and Welfare, with Takeda as the training provider.

HAE is a rare genetic disorder that results in recurrent attacks of oedema – swelling – in various parts of the body, including the abdomen, face, feet, genitals, hands and throat.

In Việt Nam, there are about 50 HAE patients at Bạch Mai General Hospital – the only specialist treatment centre for the disease in the country. Experts estimate that Việt Nam has around 2,000 HAE sufferers, but only around 2.5 per cent have been diagnosed and put into treatment.

The programme will focus on establishing testing and diagnostic techniques, building Centers of Excellence for HAE treatment, improving diagnosis rates by developing a follow-up system in major cities and developing HAE guidelines for HCPs in Việt Nam.

It will also help improve patient outcomes through marketing approval and reimbursement of new therapeutic drugs, and inform Japan and other Asian countries of the need to expand their rare disease treatment, and utilise the project as a catalyst to create an HAE and rare disease treatment ecosystem in Asia.

Takeda will collaborate with HAE expert doctors in Japan to organise a training programme on topics such as examination and diagnosis methods for HAE for Vietnamese health care providers in major hospitals in Hà Nội and HCM City as well as establish HAE treatment guidelines.

“Takeda Pharmaceuticals (Asia Pacific) Pte. Ltd. and the Ministry of Health signed a memorandum of understanding on improving the diagnosis, treatment and management of rare diseases in Việt Nam in 2018, and activities to improve diagnosis and treatment of HAE have already started. With the launch of this programme, we are looking forward to accelerating diagnosis of HAE in Việt Nam,” said Keiji Iwashita, head of Market Access & Public Affairs for Japan Pharma Business Unit.

Associate Professor Lê Thị Tuyết Lan, president of HCM City’s Society of Asthma and Allergy and Clinical Immunology, said: "I am grateful for the support Việt Nam is getting from Japan to build HAE capabilities. This is a disease that is rarely diagnosed, and we are looking forward to learning from Japanese experts so that we can give HAE patients in the country a better outlook in the future."

HAE affects an estimated 1 in 50,000 people worldwide. In Japan, it is estimated that between 2,000 and 3,000 people are living with HAE, but only approximately 450 have been diagnosed due to low awareness of the disorder in the country. — VNS