Calling Attention to Rare Tumors in Children - Shanghai Institute of Bone Cancer's Published Series Articles in Lancet

https://mp.weixin.qq.com/s/vHePTjHm3orAJ21Z41UDFw

On February 15th, International Children's Cancer Day, a bone tumor rehabilitation patient and Director Hua Yingqi of the Shanghai Institute of Bone Cancer jointly wrote an article in The Lancet Children & Adolescent Health, urging the world to pay attention to rare childhood tumors.

Siyuan reviewed the difficult and tortuous treatment process after suffering from osteosarcoma at the age of 8. She was fortunate to have been cured, but more importantly, as a personal experience, she expressed deep concerns about the global medical status of patients with the same disease and rare tumors in children. The author elaborates on the difficulties in obtaining accurate diagnosis of this type of disease, the economic difficulties, the fear of affected families, the burden of losing physical disabilities, and the lengthy rehabilitation process. Her experience is a microcosm of millions of rare tumor patients in children, and she is undoubtedly lucky. According to the long-term observation of a bone oncology department in Shanghai, missed diagnosis, misdiagnosis, delayed diagnosis, economic burden, and lack of new drugs are almost daily challenges that patients and doctors face. According to Director Hua Yingqi's recollection of his experience during his studies in the United States, there have also been many cases of missed diagnosis and misdiagnosis, as bone tumors are more likely to occur in impoverished and disadvantaged groups with lower socio-economic status.

Nowadays, the former patient has transformed into a doctoral student in the field of biomedical engineering. Her cane not only supports her recovery journey, but also serves as a guiding light for her to move towards new fields. For the past decade or so, she has persisted in using cartoon crutches to draw greeting card signatures, conveying her love and dedication to biomedical engineering, while also inspiring other patients to bravely move forward. Although illness is painful, it also teaches us courage, resilience, and never give up, making us cherish every moment of life more and use our own strength to warm and help others

Osteosarcoma and other malignant bone tumors often occur in children and adolescents. As rare tumor, although the incidence rate is relatively low, once it occur, it will bring heavy physical and mental burden and endless pain to children and their families. It is not only a challenge in the medical field, but also a problem that all sectors of society need to face together and cannot be ignored.

However, for a long time, this type of disease has not received sufficient attention from the medical community and society. In the past half century, there have been almost no new drugs introduced, and there are only a few pharmaceutical companies willing to invest in research and development. As a rare tumor in children, research funding is also very insufficient. Due to insufficient attention, the diagnosis and treatment of this type of disease have led to many detours and higher costs for patients and families compared to other common diseases. According to international statistical data, the misdiagnosis rate of malignant tumors in children's bone and soft tissue is as high as 53% -72%, with an average delayed diagnosis of 3-6 months. Developing countries are much higher than developed countries.

On International Children's Cancer Day, the global influence of The Lancet magazine emphasizes the importance of rare tumors in children and calls for global attention in this field, which has significant social significance.

The Department of Orthopedics and Oncology at the Shanghai General Hospital is not only committed to improving the diagnosis and treatment level of bone tumors, but also pays attention to the popularization and education of medical knowledge. For a long time, it has been calling for attention and support from all sectors of society for bone tumor diseases. In 2018, it collaborated with Shanghai TV to produce a documentary called "In The World: Fireworks", which brought osteosarcoma, a little-known childhood tumor, into the public eye. The Shanghai Institute of Bone Tumors cooperates with biopharmaceutical enterprises in Shanghai and across the country to actively promote the transformation and treatment of pediatric bone tumors with new drugs and instruments. At the same time, under the continuous call of experts in the field of bone oncology in China, in September 2023, the country officially included diseases such as osteosarcoma and giant cell tumor in the second batch of rare diseases in the national list, and future policies will be beneficial for the treatment of patients.

According to the literature review in this article, about 50% of affected families will encounter economic difficulties, and the actual proportion is much higher than this. Therefore, in 2014, the Bone Cancer Department in Shanghai General Hospital established the Gongji Youth Bone Cancer Public Welfare Fund with the Shanghai Soong Ching ling Foundation, dedicated to supporting impoverished young bone cancer patients. So far, the fund has successfully raised over one million yuan in donations, supporting more than 50 children with bone tumors and providing valuable support for their treatment and rehabilitation.