Since the beginning of this year, Jiangsu has incorporated 50,793 severely ill and severely disabled children into the medical insurance schemed with 450 million yuan invested by governments at all levels in the province.
Last Thursday, the parents of five children with spinal muscular atrophy presented a painting to the Provincial Civil Affairs Department to express their gratitude. Drawn by Miao Miao, a patient with SMA, the painting is called "Guardian Hope with Love".
"My daughter's hands are getting weaker but she drew a picture in a week and gave it to the government. She drew an apple tree, because she thinks the government is a big tree and she thinks the little apple represents every child. She also drew two little figures watering apple trees on behalf of government guarding hope with love."said by a parent of SMA children.
Most patients with SMA develop the disease in their infancy and when young. Muscle weakness and atrophy are caused by damage to motor neurons. If there is no targeted therapy, the patient will gradually lose various motor functions.
At the end of 2019, Miao Miao’s mother learned that Nosinagen Sodium, the targeted therapy drug for SMA, was imported into China but it cost 700 thousand yuan per injection.
The high medical expenses have almost cut off the hope of the family. More than a dozen parents rushed to the Provincial Civil Affairs Department to seek help, hoping to apply for subsistence allowances and receive medical assistance. But these families do not fall in line with the criteria for subsistence allowances.
The civil affairs staff ran around to help them seek support from the medical insurance department, and at the same time contacted charities to set up special fundraising projects for these children.
"We initiated a pneumonia rescue project for children with SMA which raised a total of more than 400 thousand yuan."said by WangYifan, Head of Crowdfunding Project, Amity Foundation.
Through strenuous efforts, Jiangsu has made an important breakthrough in medical assistance for SMA patients by reducing the cost of treatment and enabling the children to be treated.
In the meantime, the civil affairs department has required 13 prefectural cities across the province to pay living allowances to children suffering from 8 major diseases such as leukemia and malignant tumors.
Since the beginning of this year, Jiangsu has incorporated 50,793 severely ill and severely disabled children into the medical insurance schemed with 450 million yuan invested by governments at all levels in the province.
