Love Never Stops, Joining hands to care NMOSD patients across Asia and saying "NO" to relapse

BEIJING,May 27,2021 -- There is such a group of patients,who are at the golden age of their lives and should have been energetic students in the ivory tower,ladies braving the wind and waves in the workplace,or warm wives expecting at home … Their lives were full of hopes and dreams,but they were suffering from the neuromyelitis optica spectrum disorder (NMOSD).

NMOSD occurs mostly in young adults and women,and will recur constantly. 60% patients relapsed within 1 year,90% patients within 3 years. With repeated relapses,the pain accumulated and aggravated that 50% patients needed to be accompanied by wheelchairs all their lives,and 62% patients could no longer see the beautiful world or even lose their lives. Illness deprives their opportunity and possibility to satisfy their good life and make more contributions to their families and the society. They dream that one day,they can get rid of the dilemma caused by the recurrence of the disease,and say NO loudly to the relapse!

May 25th,2021 saw the second NMOSD Patient Day,and the sublimating relay of love. Sponsored by the Illness Challenge Foundation (ICF),participated and supported by NMO Home,NMO Shanghai Home,Beijing Bethune Charity Foundation NMO Care Home,Roche Pharmaceuticals China,the public welfare activity of "Say No to Relapse" 2021 Asia-Pacific NMOSD Patient Day was officially launched in Beijing.

Top neurologists,NMOSD patients,medical staff and volunteers in China gathered together; Public welfare organizations,patient organizations,medical staff and patients from many Asian countries and regions participated enthusiastically,and forces from all over the world condensed to call on all sectors to pay attention to and care for NMOSD patients,and help them face the challenges and say NO to relapse!

"Say No to Relapse" launching ceremony of national series public welfare activities in 2021

Flowers in Dilemma: the promising future of NMOSD patients

Optic neuromyelitis spectrum disorder (NMOSD) is a rare,highly relapsed and highly disabling autoimmune disease of central nervous system,which mainly damages optic nerve and spinal cord. The global total prevalence rate is 1.82/100,000,mostly occurring in young adults,more in women,with a higher incidence rate among the Asian population. Patients will experience unpredictable relapse and each recurrence may lead to nerve injury and disability accumulation,resulting in severe disability such as blindness and paralysis,and even death.

Data showed that about 60% of NMOSD patients relapsed within 1 year,and 90% relapsed within 3 years[1]. On average,every patient relapsed once every year,and the degree of disability increased with the increase of recurrence times[2]. Professor Xu Xianhao,chief physician of Department of Neurology,Beijing Hospital,said in the sharing: "The newly approved Satralizumab 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. Now that our doctors have weapons in their hands,they are more emboldened to say No to the recurrence of optic neuromyelitis."

"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. 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," added Professor Cui Liying,chief physician of Neurology Department of Peking Union Medical College Hospital.

In the past two years,Beijing Bethune Charity Foundation has continuously paid attention to NMOSD patients,and provided them with truly valuable patient education and disease management from multiple dimensions and levels by building a public welfare platform of "NMO Care Home" and carrying out a public welfare project of "Embracing Hope" for NMO patients,bringing positive influence and effective help to them. "In the future,we will continue to play the role of a public welfare platform,care for and help more patients with NMOSD,and unite all sectors of society to jointly help the construction of an ecological system of NMOSD diagnosis and treatment." stressed Fan Yanrong,Secretary General of Beijing Bethune Charity Foundation.

Full Support from Policy: guarding every special life

According to the WHO statistics,there are about 6,000-8,000 kinds of rare diseases[3]in the world. At present,there are about 1,400 kinds of rare diseases[4]known in China,with about 20 million patients. Worldwide,there are about 400 kinds of drugs for rare diseases listed in the United States,Europe and Japan. As of December 2020,China's State Food and Drug Administration has approved only 95 drugs for treating rare diseases[5]. After the adjustment of the catalogue of medicines covered by national medical insurance system at the end of 2020,55 drugs for 24 rare diseases in the First Batch of Rare Diseases List will be included in medical insurance[6]. Except that some high-value drugs for rare diseases are hard to find in the Catalogue,a large number of rare diseases are facing "no medicine to cure" in China,and the path to diagnosis and treatment for patients with rare diseases in China needs to be opened up urgently.

"No medicine available is the biggest dilemma faced by NMOSD patients at present,and their daily life is also greatly challenged," said Li Linkang,executive director of China Alliance for Rare Diseases. "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. The establishment of the national cooperative network for diagnosis and treatment of rare diseases has greatly improved the level of diagnosis and treatment of rare diseases. At the same time,with the introduction of many favourable policies on drug research and development for rare diseases,more and more therapeutic drugs have been approved in China,benefiting patients and families with rare diseases. We hope that patients with rare diseases can get early diagnosis and early treatment,and that medicines are available,affordable and applicable. This is the direction I have been working hard for."

At present,the overall awareness of NMOSD diseases is still relatively low. In order to raise the attention of the whole society to diseases and patient groups,ICFhas joined hands with various patient organizations to set up "5·25 NMOSD Patient Day" from 2020,hoping to encourage all patients to cherish their lives and self. Wang Yiou,Secretary-General of ICF,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. 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 allowmore patients have the confidence to say Notodestinyand disease!"

SayingNO to Relapse: love never stops

According to the survey,disease is the main cause of all patients' unemployment/out-of-school. 90% of the unemployed and 100%[7]of the out-of-school cases are caused by disease7. However,those who should be the mainstay of family economy cannot make more contributions to family and society,and it is even more difficult for them to realize their life plans and dreams.

The energy of life is always tenacious,and the phrase "Say Noto relapse" on the activity poster seems to let people see the surging persistence and hope in the author's heart. This is the work of 32-year-old Ying Ya (alias). As an NMOSD patient,she has severe visual and limb dysfunction due to repeated recurrences of the disease. "When I was a child,I liked playing basketball very much,but when I graduated from college,I couldn't exercise for a long time because of the constant recurrence of diseases. Later,I couldn't work related to my favourite major,and I often needed the care of my elderly parents in my life."Ying Ya felt sorry when recalling the past,but she is still full of hope in the face of the future."It was unfortunate to get NMOSD at the best age,which also made me fall into despair for a time. But I am lucky. 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. The road ahead is still very long. There are still many things to do and dreams to be realized. I am willing to work together with all patients to say Noto relapse and find a better life that belongs to us. "

At the spot,YingYa as a patient representative,togetherwithProfessor Huang Dehui,Chief Physician of Neurology Department of First Medical Center of PLA General Hospital,Professor Zhang Xinghu,Chief Physician of Neuroinfection and Immunology Department of Beijing Tiantan Hospital affiliated to Capital Medical University,Sun Rongjia,Deputy Secretary General of ICF,Shi Yuanyuan,Deputy Secretary General of Beijing Bethune CharityFoundation,Yang Qihui,Head of Demyelination Project Team of ICF,Zheng Jiayin,the project leader of China Rare Diseases Alliance,and other national NMOSD experts,representatives of institutions and patients,launched theseriesSay "No" to Relapsenational public welfare activities,whichwill focus on Beijing,and simultaneously link Shanghai,Guangzhou (May 26),Chengdu,Hong Kong,Singapore,Malaysia,Indonesia and other countries and regions to gather powerful energy to support NMOSD patients. Love never stops.

[1] Neuroimmunology Branch of Chinese Immunology Society. Chinese Journal of Neuroimmunology and Neurology,2016,23(3):155-166.

[2] WingerchukDM,etal.LancetNeurol.2007Sep;6(9):805-15.

[3] Rheumatology,https://mp.weixin.qq.com/s/8rP_71-5-VcL4vmpibK87Q

[4] Wang Chaoxia. (2016). Investigation and research on rare diseases based on inpatient data of Grade III Class-A hospitals in Beijing. Paper presented at the Fourth Beijing Academic Conference on Rare Diseases and 2016 Beijing-Tianjin-Hebei Academic Conference on Rare Diseases,Beijing.

[5] China Rare Disease Industry Observation (2021),Badianjianwen & ICF

[6] "2020 Multi-party Co-payment Practice Report of Medical Assistance Project for Rare Diseases",ICF

[7] Whitepaper on Comprehensive Social Survey of NMOSD Patients in China