Improving quality of life for rare disease patients in Vietnam

December 27, 2021 | 08:29
Over the past few years, Vietnam has placed more focus on rare diseases and enhanced rare disease capabilities in diagnosis, treatment, and management guidelines for some rare diseases. To advance this progress, the Vietnamese Ministry of Health has explored collaborating in public-private partnerships with various stakeholders such as pharmaceutical companies. Katharina Geppert, country manager of Takeda Vietnam, talked with VIR about their contributions to rare diseases in Vietnam.
Improving quality of life for rare disease patients in Vietnam
Katharina Geppert - Country manager of Takeda Vietnam

Can you share with us why Takeda pays interest to the rare disease agenda in Vietnam? What are your observations about rare diseases?

Although a small number of patients worldwide have rare diseases, their impact is relatively huge, yet they are often neglected. Around 350 million people live with a rare disease worldwide, which accounts in total for 3.5-5.9 per cent of the worldwide population. Complex and rare diseases are hard to diagnose, treat, and manage. Many patients often spend 5-7 years visiting up to eight separate physicians and receive up to three misdiagnoses before getting a proper diagnosis.

Of the approximately 8,000 known rare diseases, 95 per cent have no approved curative treatments but treatment options are progressing quickly, and we aim to help more patients with a rare disease, so that no one is left behind. According to the World Health Organization (WHO), it is estimated that almost one in 15 people, or around 6 million people, are affected by approximately 100 rare diseases in Vietnam.

Since 2018, Takeda Vietnam and the Medical Services Administration of the Ministry of Health have started making efforts to address challenging diseases by signing an MoU on “Improving diagnosis, treatment and management of specific rare diseases in Vietnam” for 2018-2023. As a result, Vietnam has been making great strides in the diagnosis, treatment, and management of a number of rare diseases.

We all know that the increasing access to innovative medicines for complex and 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. As a global biopharmaceutical leader, Takeda is committed to translating science into highly-innovative medicines for complex and rare diseases to make a difference to people’s lives.

What were Takeda’s contributions for rare disease patients so far in Vietnam?

First, with the above-mentioned MoU, we try to set the framework so that patients with rare diseases get improved access to diagnosis and treatment. Let me illustrate this in more detail with the example of haemophilia, a rare blood clotting disorder, that is estimated to affect over 6,000 people in Vietnam, but only 3,600 patients have been identified. The advancements for haemophilia since 2014 have been remarkable and Takeda supported those efforts by hosting workshops for healthcare providers, training nurses and patients on how to manage their disease and to support the activities of Vietnam’s Haemophilia Association.

Recently, Takeda has announced the launch of a programme in collaboration with the National Center for Global Health and Medicine (NCGM) Japan, entrusted by the Ministry of Health, Labour and Welfare in Japan, and the Asthma-Allergy-Clinical Immunology Association of Ho Chi Minh City (HSAACI) to implement a project for patients with Hereditary Angioedema (HAE). The goal is to enhance public awareness and healthcare professionals’ capacity, establish diagnostic methods and strengthen treatment guidelines for HAE in Vietnam. Takeda is the first pharmaceutical company entrusted as a facilitator of such a project, to bring together expert doctors from Japan with the HSAACI to execute the programme by holding lectures on HAE topics such as examination, diagnosis methods, and treatment guidelines for healthcare professionals at major hospitals in Hanoi and Ho Chi Minh City.

This year, Takeda marks its 240th founding anniversary. Could you shed light on what Takeda has innovated besides highly innovative medicines for complex and rare diseases? And what is Takeda’s commitment in Vietnam?

Since Takeda’s founding in 1781, we have been trying to improve patients’ lives while adhering to high ethical standards and doing what is best for society. In more recent years, we have committed to discovering and delivering highly transformative medicines and vaccines to patients, focusing on diseases with the highest unmet needs.

We have also created a practical framework that guides our efforts to increase sustainable access to innovative medicines for complex and rare diseases through local partnerships across the entire patient journey. It is focused on building sustainable capacity at every stage – from awareness and diagnosis to ongoing patient support, innovative affordability programmes to increase patient access to our highly innovative medicines and collaborating with policy-makers to enable an environment that improves patient access.

We also work on innovative solutions for patients to overcome affordability barriers to access the medicines they need. These need to be sustainable but are tailored to each country and are designed in a way that as many patients as possible can get access, we call them “Patient Assistance Programme” (PAPs).

Furthermore, we use tailored collaborative models across the world where patients, Takeda, and at times local authorities, foundations, medical associations, charities and other parties, work together to improve the standard of care for patients. They are currently running such programmes across 14 countries in Asia, Africa, Latin America, Middle East, and Europe.

In Vietnam, Takeda commits to being a long-term trusted healthcare partner through healthcare system strengthening and providing innovative access solutions to rare disease and oncology patients. Especially by building sustainable capacities and broadening patient access with regards to awareness and diagnosis rates for rare diseases and oncology; Takeda will apply an “Access-First Mindset” to healthcare challenges in Vietnam and improve patient advocacy by partnering with external stakeholders including government, non-governmental organisations, policy-makers, healthcare professionals, and patient advocacy.

By Mai Dang

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