Novartis and Beijing Pain Challenge Foundation Launch China's First Public Welfare Fund for Multiple Sclerosis

Multi-Stakeholder Collaboration Empowers Patients: Building a Platform for Exchange and Sharing Among Individuals with Multiple Sclerosis

Shanghai, April 3, 2020 /PRNewswire/ -- Today, Novartis and the Beijing Pain Challenge Public Welfare Foundation jointly launched the "Novartis Multiple Sclerosis Public Welfare Fund" (hereinafter referred to as the "Public Welfare Fund"). As China's first public welfare fund dedicated to multiple sclerosis, a rare disease, the fund will address patients' actual needs by integrating online and offline channels. In collaboration with the multiple sclerosis patient organization "Home of MS," it will leverage multi-stakeholder efforts to carry out activities including expert Q&A sessions, disease education, patient capacity building, and community mutual aid, thereby enhancing patients' ability to cope with the disease and helping them return to normal life.

“The diagnosis and treatment of rare diseases such as multiple sclerosis is not merely a medical issue, but also a public health concern that requires collaborative efforts from physicians, patients, families, and society. We call on the government and the broader community to further increase attention to rare diseases like multiple sclerosis, enhance disease awareness, improve assistance and security systems, and elevate the quality of life for patients.”Professor Cui Liying, Chair of the Department of Neurology, Peking Union Medical College HospitalCall for Action.

“With policy support and continuous media publicity, we are pleased to see that rare diseases are gradually becoming better understood by the general public. However, there is still a long way to go to truly advance the cause of rare diseases and safeguard the treatment and health rights of patients with rare diseases.”Ms. Wang Yiou, Secretary-General of the Beijing Pain Challenge Public Welfare Foundationstated, “The Multiple Sclerosis Special Public Welfare Fund will leverage the advantage of ‘collective disease resistance,’ harnessing the combined forces of experts, fellow patients, patient organizations, and society to empower patients and strengthen their ability and confidence in combating the disease.”

Zhang Ying, President of Novartis Pharmaceuticals (China)The lady stated, “I am delighted that Novartis has partnered with the Patient Challenge Public Welfare Foundation to establish China’s first public welfare fund for multiple sclerosis. As a global leader in pharmaceuticals and healthcare, Novartis believes that every patient deserves better treatment. We not only develop and manufacture breakthrough innovative medicines but are also committed to collaborating with all stakeholders to leverage our respective strengths and enhance patient care and disease management. We hope that the establishment of the Novartis Multiple Sclerosis Public Welfare Fund will bring greater hope for health and improved quality of life to patients.”

Urgent Need to Improve the Diagnosis and Treatment of Multiple Sclerosis Only 10% of patients receivedDMTTreatment

Multiple sclerosis is a chronic inflammatory demyelinating disease of the central nervous system, predominantly affecting young and middle-aged adults aged 20–40 years, with a higher incidence in women. Multiple sclerosis may cause symptoms such as vision loss, diplopia, sensory disturbances in the limbs, motor impairments in the limbs, ataxia, and bladder or bowel dysfunction. In China, there are more than 30,000^[1]Multiple Sclerosis Patients. As a rare disease, multiple sclerosis presents numerous challenges in treatment, management, and rehabilitation for patients living with the condition over the long term.

Professor Xu Yan, Department of Neurology, Peking Union Medical College HospitalIt stated: “Multiple sclerosis is a lifelong disease, and patients require long-term treatment. Clinically, multiple sclerosis is classified into several subtypes, with over 80% of patients having relapsing-remitting multiple sclerosis.”^[1]Disease-modifying therapies (DMTs) are the standard-of-care medications recommended by domestic and international guidelines and consensus statements for the relapse-remitting phase; they can effectively reduce relapse frequency and delay disability progression, ultimately improving quality of life. In China, only 10% of patients receive standardized disease-modifying therapy, a concerning state of diagnosis and treatment.

Yaoyao(Pseudonym) was diagnosed with multiple sclerosis in 2018. During her diagnosis and treatment journey, she encountered many challenges commonly faced by most patients—insufficient disease awareness, multiple misdiagnoses before a confirmed diagnosis, and a lack of scientific disease management guidance and efficient assistance and support mechanisms during the rehabilitation phase. It was precisely because of these detours that she voluntarily joined the patient operations team of the Multiple Sclerosis Home community while undergoing rehabilitation, serving as the Public Affairs Liaison Officer to help more patients face the disease with a positive mindset. She stated, “Being diagnosed with multiple sclerosis does not mean losing the possibility of living independently. We look forward to greater support and respect in areas such as medical rehabilitation, protection of rights and interests, education and employment, and social integration. We hope that patients can scientifically understand and manage the disease, strengthen their resolve, and bravely face the challenges posed by the disease.”

[1] Chinese Society of Neurology, Chinese Medical Association. (2018). Survival Report for Patients with Multiple Sclerosis in China.