Roche Helps Bring NMOSD Patient Day to China

The Illness Challenge Foundation (ICF) sponsored the second annual Asia-Pacific NMOSD Patient Day in Beijing, China, to increase awareness and improve care for those living with neuromyelitis optica spectrum disorder (NMOSD).

The May 25 event brought together NMOSD patients, neurologists and other healthcare professionals, and representatives from a variety of private and public organizations, to work toward helping patients “say no to relapse.”

A press release from Roche Pharmaceuticals, which helped support the event, described the day as a “sublimating relay of love.”

“I feel the care and real support from all walks of life for patients with NMOSD, and regain confidence and strength to fight against disease and fate,” said Ying Ya (alias), a 32-year-old woman who lives with NMOSD.

This year saw particular reason for hope. Last month, Enspryng (satralizumab), a medication developed by Chugai Pharmaceutical (a subsidiary of Roche), became the first approved treatment for NMOSD in China.

In clinical trials, treatment with Enspryng, which is administered by subcutaneous (under-the-skin) injection every four weeks, significantly reduced the risk of relapses in NMOSD patients.

“The newly approved satralizumab [Enspryng] in May this year filled the gap of NMOSD treatment in China, which, as the first NMOSD treatment drug in the country, can effectively prevent recurrence, reduce serious disabilities such as blindness and paralysis caused by frequent relapses, and help patients return to society normally,” said Xu Xianhao, MD, chief physician of the department of neurology at Beijing Hospital.

Notably, in NMOSD, disability tends to accumulate with relapses, which means a person’s health usually is worse after a relapse than it was before. This contrasts with other conditions, like the relapsing-remitting from of multiple sclerosis, where patients often regain a similar level of function to what they had prior to a relapse.

“Reducing the recurrence risk of NMOSD patients is the key to NMOSD treatment. Now we have the first drug approved to prevent relapse of NMOSD, and patients have more hope,” said Cui Liying, MD, chief physician of the neurology department at Peking Union Medical College Hospital.

“Overcoming diseases, allowing more patients with rare diseases to enjoy equal health rights, and having a happy life and a bright future like normal people is the common goal pursued by doctors and patients,” Liying added.

People with rare diseases who live in China have often faced barriers accessing treatment, compared to patients with the same condition elsewhere in the world. According to Roche, nearly 400 different kinds of medications for the treatment of rare diseases have been approved in the United States, Europe, and Japan. In China, just 95 such medications had been approved as of December. 

“No medicine available is the biggest dilemma faced by NMOSD patients at present … However, we are also pleased to see that thanks to the country’s vigorous promotion of the development of rare diseases research and treatment, the prevention and treatment of rare diseases in China has moved into the fast lane,” said Li Linkang, executive director of China Alliance for Rare Diseases.

Linkang noted that various changes,  ranging from increased cooperation among healthcare providers to facilitate diagnosis and treatment, to new policies concerning drug research and development, have helped to facilitate these advancements.

“We hope that patients with rare diseases can get early diagnosis and early treatment, and that medicines are available, affordable and applicable,” Linkang said.

“We are very much looking forward to more special drugs for rare diseases being approved for marketing as soon as possible, so that patients with rare diseases can truly realize themselves and enjoy their lives with dignity after solving their problems,” added Wang Yiou, secretary-general of ICF.

“In the future, with the introduction of many favourable policies for the research and development of rare disease drugs, more and more effective drugs will enter China, solve the urgent problems faced by rare disease patient groups, and allow more patients [to] have the confidence to say No to destiny and disease!” Yiou said.