On April 21, 2022, thanks to the close cooperation between the Tibet Autonomous Region People’s Hospital and PUMCH, an adult Tibetan patient with spinal muscular atrophy (SMA) successfully completed the intrathecal administration of Spinraza as the first patient in Tibet to receive this treatment.
Having suffered from progressive limb weakness and muscle atrophy for 18 years, the patient was treated in the Department of Neurology at the Tibet Autonomous Region People’s Hospital in early 2022. Zhou Lixin, a PUMCH neurologist aiding Tibet, considering the clinical symptoms and electromyography results, made the primary diagnosis of SMA. Later, the diagnosis of SMA was confirmed by genetic testing and the indication for Spinraza was suggested.
Zhao Yuhua, Director of the Department of Neurology at the Tibet Autonomous Region People’s Hospital, and Zhou Lixin immediately applied for temporary subscription of Spinraza, which was strongly supported by medical security bureau of Tibet Autonomous Region and the hospital. In just one month, the patient’s medical expense was covered by medical insurance, and the medicine was arrived as well.
As the leading hospital of the campaign for medical talents to aid Tibet in groups, PUMCH has built a “life-saving channel” spanning thousands of kilometers via the remote consultation platform. Dai Yi, deputy chief physician of the Department of Neurology, and Cui Xulei, deputy chief physician of the Department of Anesthesiology, gave guidance through remote consultation, sharing PUMCH’s experience in intrathecal injection, patient evaluation before medication, and precautions for intrathecal injection, etc.
Thanks to the close cooperation between the Tibet Autonomous Region People’s Hospital and PUMCH, the patient received intrathecal administration of Spinraza successfully, for which he was truly grateful. “This disease has haunted me for many years. Even though there were drugs for it, I could not afford them and had to endure the excruciating pain. Now thanks to the medical insurance policy, I have been injected the once expensive drug. I see new hope in my life now.”
Zhou Lixin (first from left), a neurologist aiding Tibet, asked about the patient’s conditions
Reporter: Fan Xinchen
Picture courtesy: The Tibet Autonomous Region People’s Hospital
Translator: Liu Haiyan
Editor: Yang Xunzhe and Wang Yao