The Duoshen conference in China

MSIF has been supporting the MS community in China since 2011. Since then, Chinese MS groups have grown and formed alliances with advocates for related neurological conditions in China such as Neuromyelitis optica (NMO) and Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD). Together they campaign under the name Duoshen. This September the MS, NMOSD, and MOGAD community in China organised the 2024 Duoshen Conference to mark its 10th anniversary. Abdelfatah, MSIF’s Head of Communications, Campaigns, and Advocacy attended the conference and shares the experience in this article.

Hotpot for all

A few hours after my long flight from London Heathrow to Beijing, I went down to the lobby for a group hotpot dinner with Duoshen’s team and guests!

In Chinese culture, hotpot is much more than just a meal; the experience represents several key values, particularly the importance of sharing and collective harmony. It’s no wonder that there is a Chinese saying: ‘hotpot is inclusive – everyone can find a flavour they like.’

What a wonderful way to kick off my visit! Sitting around the table with people from Chinese, American, Egyptian and Bengali backgrounds reinforced our shared values and the sense of global community.

It had been almost a decade since I last met with representatives Gao Wen and Hong Fei in person, both of whom were instrumental in establishing Duoshenformally called MSZJ – MS Home. My excitement to catch up with them surpassed even the delicious hotpot. We eagerly shared updates on our latest projects and activities we look forward to in future.

Hospital visit

The next day, Duoshen organised a visit for the international speakers to Beijing Tiantan Hospital and the China National Clinical Research Centre for Neurological Diseases. We were shown around the hospital and research centre, followed by presentations on MS, NMOSD, and MOGAD from Chinese researchers. The session concluded with presentations from Professor Joachim Havla from Germany and Professor Michael Levy from the USA, both of whom joined us for the conference. I left the hospital visit with a deeper understanding of the ongoing advancements in care and research with these conditions in China.

The big day

As delegates walked into the conference hall, a large banner told the story of Duoshen over the past ten years. The conference began with an emotive video clip showcasing individuals with MS and healthcare professionals produced by Duoshen to mark World MS Day 2024. The video featured beautiful lyrics but one line really resonated with me: ‘where there is love, there are miracles.’ The theme of the 2024 Duoshen conference was ‘To Shine, To Illuminate’.

Gao Wen, co-founder of Duoshen, addressed the audience sharing his journey with the organisation and key milestones in Duoshen’s history.

My turn came to speak during the opening session, and I felt honoured to reflect on MSIF’s support for the MS community in China since 2011, as well as the years of collaboration with the MSZJ to enhance the quality of life for those living with MS. I also delivered a talk on how patient organisations support newly diagnosed individuals with MS, sharing examples from the global MS movement.

The conference featured many outstanding presentations, with individuals sharing their experiences living with MS, NMOSD, and MOGAD, alongside discussions of the latest studies and research.

Another highlight of the day was the celebration of Duoshen’s 10th anniversary. It was a moment filled with joy and tears, representing both the achievements and challenges faced by patient-led organisations on their journeys.

The conference was livestreamed, attracting thousands of online viewers. The impressive turnout in person and online, coupled with the presence of high-profile Chinese healthcare professionals and international speakers underscored the importance of the Duoshen’s work.

MS diagnosis and treatment in China

As advocacy and campaigning are central to my role, I was eager to learn more about access to diagnosis and treatment for people with MS in China.

I listened intently to a presented study conducted by Fudan University, which identified MS diagnostic and treatment needs in China. The study (Hu, 2024) revealed significant delays, caused primarily by time taken between an initial clinical consultation and a confirmed diagnosis. There was an average waiting period of around 16 months compared to the international standard of five months.

On a positive note, the study indicated improvements in the availability and insurance coverage of Disease-Modifying Therapies (DMTs) in China, with a 48% increase in DMT usage rates between 2018 and 2022. However, the cost of MS treatment remains a major barrier, with 62% of study participants reporting that the financial burden led them to discontinuing taking DMTs.

The last time I visited China there was only one MS treatment available in the country. It was encouraging to see progress on this front, as there are now seven MS treatments and one symptomatic treatment available. I felt hopeful learning about Duoshen’s efforts to improve access to MS treatments, whether by advocating to retain existing therapies or by pushing for more MS treatments to be included under medical insurance.

MOGAD and NMOSD in China

Duoshen rebranded from their previous name, MSZJ/MS Home, to better reflect their work in supporting individuals NMOSD and MOGAD alongside MS. This rebranding is particularly relevant to China, given the increasing number of diagnoses and re-diagnoses of NMOSD in the country, which at times exceed those of MS.

I was fortunate to be accompanied by our friends from the Sumaira Foundation, a US-based organisation dedicated to raising global awareness of NMOSD and MOGAD. This opportunity allowed me to gain insight into the Sumaira Foundation’s work and to meet the inspiring team behind the organisation, including founder Sumaira Ahmed, who is herself living with NMOSD.

Throughout my visit, I was intrigued to learn more about the context of MS, MOGAD, and NMOSD in China, whether through studies presented during the conference, discussions with researchers at Tiantan Hospital, or conversations with representatives from the Sumaira Foundation.

A time to reflect

As I spent my last few hours in China wandering through the hutongs—narrow alleys of the old part of the city—I couldn’t help but reflect on an incredible MS movement building journey over many years in the country. MSIF’s ultimate objective since 2011 has always been to establish a self-reliant MS organisation in China. Looking back to when I first met MSZJ volunteers in Beijing to develop its initial strategy and work plan in 2014 and 2015, it’s fantastic to see how far they have come and the important role they play in the MS community and beyond.

This piece was written by Abdelfatah Ibrahim, MSIF’s Head of Communications, Campaigns, and Advocacy. We are grateful to the Duoshen community in China for welcoming MSIF to the 2024 Duoshen Conference.