Thanks to the hope brought by the soul bargaining medicine, Taiwan's rare disease girl returns to Guangdong for injection | Taiwan | Soul

"It's here! We're back!" As the plane crossed the Taiwan Strait and landed at Guangzhou Baiyun Airport, she saw the buildings on the ground gradually becoming clearer. 12-year-old Taiwanese girl Wang Jieyi happily lay on the porthole, looking out.

The last time I came to the mainland was 236 days ago.

In order to become a "life-saving drug" - the world's first precise targeted treatment drug for spinal muscular atrophy, sodium injection, Wang Jieyi, who suffers from this rare disease, went to Dongguan Maternal and Child Health Hospital in Guangdong Province for treatment after several twists and turns. Previously, through negotiations with the National Medical Insurance Administration on medical insurance drugs, the cost of a single injection of Noxinasen Sodium was reduced from 700000 yuan to 33000 yuan, while in Taiwan, this price is approximately 450000 yuan. This has reignited hope for Wang Jieyi, who originally couldn't afford the expensive life-saving medicine.

Wang Jieyi expressed his gratitude to the attending physician Zhou Xinlong with the handwritten Li script banner calligraphy "Zhi Ruo Qiu Shuang".

This time, it is a journey of gratitude. She returned to Dongguan with her parents and sister, a family of four, and expressed gratitude to the attending physician Zhou Xinlong, with her handwritten clerical script banner calligraphy "Zhi Ruo Qiu Shuang".

"I want to be stronger," said Wang Jieyi, who will enter high school this year. "My ambition is like autumn frost," which is not only a praise for my doctor uncle, but also an encouragement for myself.

The life-saving medicine brings the first hope

She was rejected by the exorbitant price

"Mom..." Wang Jieyi, sitting in a wheelchair, had short hair in her ears, glasses on, and a smile on her face. She habitually picked up her mother Li Wenting's hand and placed it on her cheek, feeling the warmth of maternal love.

Strong and sensible Wang Jieyi, with a happy and harmonious family, it is hard to imagine that they have been tormented by rare diseases for more than 10 years.

At the age of 1 year and 8 months, Wang Jieyi was diagnosed with SMA at the affiliated hospital of Taiwan University School of Medicine. This is an autosomal recessive genetic disease caused by genetic defects. As patients age, they will experience muscle atrophy and weakness throughout the body, gradually losing their motor function.

"There are no therapeutic drugs in the world yet. But don't lose heart, learn nursing knowledge, take good care of children, maybe medicine will soon achieve breakthroughs." The words of the attending doctor at that time deeply imprinted in Li Wenting's mind.

Li Wenting and her husband Wang Yuren were like frosted eggplants, with a sense of despair enveloping their hearts. But they did not give up: the genes of rare disease children come from their parents and should not be a burden on the family.

In 2016, hope emerged, with the approval of the United States for the marketing of Nosenazone Sodium Injection. Four years later, Taiwan approved some patients to use it for free, but unfortunately, Wang Jieyi is not on the whitelist.

"At that time, Taiwan stipulated that children under 7 years old could receive free injections if they met the relevant conditions, and those over 7 years old could only afford to do so at their own expense. A full self funded injection would cost about 450000 RMB, which the vast majority of patients' families could not afford." said Li Yijie, the director of the Taiwan "Window of Life Charity Association", which is also a SMA patient.

As time passed, Wang Jieyi continued to grow and grow taller. The rare illness caused immense pain, and her muscles seemed to be drained from her body, making it impossible for her to walk normally. Two years ago, her scoliosis began to worsen, and even installing steel plates on both sides of the spine could not prevent the condition from worsening.

"In less than three months, the curvature of the spine exceeded 50 degrees." Thinking of this past, Li Wenting couldn't help but shed tears.

One night, Wang Jieyi accidentally slipped and hit the back of his head, and his right foot was also injured. Late at night, a faint voice came. Li Wenting opened the room door and found that her daughter had climbed more than 10 meters and knocked on the door for help: "My feet hurt so much! It really hurts!"

When the life-saving medicine arrived, it was rejected due to its exorbitant price. As her daughter's condition continued to worsen, Li Wenting became extremely anxious and said, "Why can't my daughter take medication? How long does she have to wait? She really doesn't have time..."

"Soul bargaining" cuts off a second hope

She was finally saved

In order to treat her daughter's illness, Li Wenting refused to let go of any hope. She found friends in the UK and Japan to learn about the local medication conditions. My friend replied that either enrolling or becoming a citizen is necessary for free medication. For Wang Jieyi, the opportunity is slim.

In 2021, hope will reappear.

In November of that year, Zhang Jinni, the negotiating representative of the National Medical Insurance Administration, "soul bargaining", cut the price of one injection of sodium nitroprusside from 700000 yuan to 33000 yuan. After this rare disease was treated with life-saving drugs, it was also included in the medical insurance catalog. Patients with social insurance only need 11000 yuan for a single injection, and their financial burden is minimized to the greatest extent possible.

"Every small group should not be given up." A sentence from the negotiation scene of "Soul Bargaining" instantly hit Wang Yuren's heart. But due to the significant price difference, the family couldn't easily believe it, fearing that this second hope would be shattered again.

Wang Yuren and his wife inquired about medication conditions and prices from hospitals in Beijing, Shanghai, Xiamen, Changsha, and Dongguan through friends or charitable organizations. They have a Taiwanese friend who has settled in Dongguan. He visited Dongguan Maternal and Child Health Hospital several times and consulted with Zhou Xinlong, the director of the Department of Pediatric Intensive Care Medicine. The answer he received was: "It can be administered at a price of 33000 yuan per injection.".

Half believing and half doubting, they came to the mainland to seek medical treatment.

On October 29, 2022, the couple crossed mountains and seas with Wang Jieyi, flew from Taipei to Xiamen, and then took the high-speed rail to Dongguan. "At the moment we walked out of Humen high-speed railway station and into Dongguan Maternal and Child Health Hospital, our hearts were still hanging." Li Wenting smiled and said, "On the first day of hospitalization, when she paid the fee, she stared intently at the charging screen. When it showed that the price of a needle was 33000 yuan, the hanging heart finally let go.".

The next day, Zhou Xinlong slowly injected 5 milliliters of Noxinasen sodium injection through Wang Jieyi's lumbar intervertebral space.

Zhou Xinlong injected Wang Jieyi with Noxinasone Sodium Injection.

At this moment, Li Wenting burst into tears, completely releasing her emotions that had accumulated for over 10 years. "Every parent hopes that their child can grow up safely, and their daughter has finally been saved! Thank you to the 'bargaining' of medical insurance and medical staff!"

Subsequently, on the 14th, 28th, and 63rd days, medical staff administered Wang Jieyi three loading doses. The first course of treatment consisted of 4 injections of medication, and the treatment cost decreased from approximately 2 million RMB per year in Taiwan to only about 130000 RMB.

Spokesperson of the Taiwan Affairs Office, Zhu Fenglian, specifically mentioned Wang Jieyi's story at a press conference. She said that Taiwanese children who went to mainland China for treatment used this medicine and enjoyed price reduction benefits together with their mainland compatriots. "We are happy for her, and if she joins mainland China's medical insurance, she can also enjoy lower prices.".

Conveying love and warmth

Becoming their third hope

Before heading to the mainland for medical treatment, friends around you may ask: Do you understand the mainland? Is the medical level in mainland China high? Li Wenting always answers, "As parents, as long as they treat their children well, they will keep moving forward."

Stepping onto the mainland, they gained surprises and emotions along the way. During the 79 days of treatment in Dongguan, there were countless heartwarming moments in their memories——

At the high-speed railway station, the station staff pushed Wang Jieyi while walking on the wheelchair passage and pulling at home;

At the hospital, Zhou Xinlong invited Li Wenting to join the WeChat group of the parents of the sick child and told her, "If the child is uncomfortable, feel free to contact me at any time." This allowed her to experience an unprecedented diagnostic and treatment mode, feeling that doctors are always caring for the patient;

At the hotel, the staff learned that the family came specifically from Taiwan to seek medical treatment in Dongguan and directly waived part of the room fee

After returning to Taiwan, Li Wenting kept telling her friends, "We have received enthusiastic help from many mainland compatriots and felt the warmth of backing away from our motherland!"

She also became a "waiter" for the patient association. "There are still over 400 patients in Taiwan waiting for the 'life-saving medicine', and currently 5 have contacted me to learn how to receive treatment in mainland China." Whenever she receives a consultation, she always answers questions carefully, shares her experience, and hopes that more Taiwanese patients can use the 'soul bargaining medicine'.

On June 20th, a SMA patient named Xiaoyu from Taiwan, who had been diagnosed for 7 years, successfully received the first dose of medication at Zhongshan Hospital affiliated with Xiamen University, becoming the second Taiwanese patient to benefit after Wang Jieyi.

Zhou Xinlong injected Wang Jieyi with Noxinasone Sodium Injection.

A rare disease that affects both sides of the Taiwan Strait.

Nowadays, there is a family portrait in the cabinet of Li Wenting's home. In front of the family portrait, there are 5 boxes of sodium nitroprusside injection, 4 simplified Chinese packaging boxes, and an English packaging box. The box is written with the injection time and location, detailing Wang Jieyi's treatment process.

After Wang Jieyi returned from Dongguan, Taiwan expanded the scope of free use of Noxinasone Sodium Injection, and she finally entered the "whitelist" and received the fifth maintenance injection in Taiwan.

"Without seeking medical treatment in mainland China, there is no way to receive free treatment in Taiwan." Speaking of returning to mainland China, Li Wenting said, "This is a grateful trip." We should thank Zhou Xinlong and the people who have helped us in person, and at the same time congratulate our eldest daughter on graduating from elementary school, making up for the regret of our youngest daughter not being able to travel with us last time. ".

After arriving in Guangzhou, the family will enjoy the the Pearl River, Huacheng Square, Beijing Road Pedestrian Street and Chimelong Zoo, enjoy Cantonese cuisine, Cantonese morning tea and spicy sticks, konjak and cheese sticks, and experience the urban style and flavor of the mainland.

Amidst the hustle and bustle, the family also imagined the future.

My eldest daughter said, "When I grow up, I hope to become a lawyer or a space designer. Lawyers can see a bigger world, and space designers can design their own rooms."

Dad and Mom said, "When our child's health improves, we will come back often. We hope to spread more love and warmth between the two sides of the Taiwan Strait."

[Writing] Southern+Reporter Huang Jinhui, Bian Delong, and Wu Shaomin

[Photography] Southern+Reporter Zhang Ziwang

[Poster] Gan Zhanping

Make more "home trips" possible

Wen | Wang Qingfeng

The "homecoming journey" of 12-year-old Taiwanese girl Wang Jieyi has attracted widespread attention. However, this "return home" trip is from Taiwan to mainland China - the girl was diagnosed with spinal muscular atrophy, and the cost of treatment with injection drugs in Taiwan is 2.04 million yuan, but in mainland China it only costs 130000 yuan. In order to treat her illness, the girl came to Dongguan Maternal and Child Health Hospital and received 4 injections in 79 days, and her condition improved significantly. Returning to the mainland this time is a special trip to express gratitude for the kindness of treatment.

Behind almost every rare disease, there are many twists and turns that we cannot imagine. Taiwanese girl Wang Jieyi is no exception. She has been confused and evaded, and as her condition worsens, she becomes even more painful. She is at a loss in the face of expensive medicine prices. In her darkest moments, the gospel brought by the mainland's life-saving medicine is like a ray of sunshine in the darkness and a rope in drowning. It not only shows her hope to live, but also makes us deeply feel the warmth of human love and home. Through her experience, we can read at least three stories.

The first story is about "soul bargaining". The drug used to treat SMA is called Noxinasone Sodium Injection, which was initially listed at a price of 700000 yuan per injection. In 2021, after negotiations with the national medical insurance, it entered the medical insurance catalog at a price of around 33000 yuan per injection. In this negotiation, representatives from the National Medical Insurance Administration repeatedly questioned, "May I ask if this is the final quotation confirmed by you?" "I want you to discuss it again, okay?" The company representative left the seat 8 times and discussed, which was referred to as "soul bargaining" by netizens. In recent years, the National Medical Insurance Administration has played the role of a "strategic purchaser", concentrating on quantity based procurement from top to bottom, promoting more drugs to be included in the medical insurance catalog, and more patients have achieved a transformation from "not being able to afford them at all" to "being able to afford them", which has truly enhanced their sense of gain.

The second story is about "putting the people first". Every drug entering the medical insurance catalog is related to the lives and health of many people, and rare disease drugs can especially reflect the care for special groups. Although the incidence of rare diseases is relatively limited, considering the huge population base of our country, the number of this group cannot be underestimated. The latest data shows that there are over 20 million rare disease patients in China, with over 200000 new patients added each year. Faced with their demands, China continues to make efforts to optimize drug approval access, reduce taxes, and negotiate medical insurance prices, promoting the inclusion of 73 drugs for 31 rare diseases in medical insurance. As a healthcare negotiator once said, "Every small group should not be abandoned." Isn't this a vivid manifestation of putting people first and life first?

The third aspect is the story of "one family on both sides of the Taiwan Strait". Taiwanese girls who go to mainland China for treatment and use "life-saving drugs" enjoy discounted benefits together with their mainland compatriots, reflecting the strong human touch of the motherland and meticulous care for Taiwanese compatriots. In February of this year, spokesperson for the Taiwan Affairs Office, Zhu Fenglian, responded to this matter by stating that there are no policy barriers for Taiwanese residents who work or reside in mainland China to participate in medical insurance, and they can all pay according to regulations and enjoy corresponding benefits. This further demonstrates that our compatriots on both sides of the Taiwan Strait are closely connected, and we treat them equally. I believe that with the support of a strong motherland, the areas and scope for Taiwan compatriots to enjoy equal treatment on the mainland will continue to expand, and the people's well-being and development space of Taiwan compatriots will be better.

Illness is merciless, there is love in the world. The warm interaction between the two sides of the Taiwan Strait has touched countless people and enhanced the national identity and spiritual harmony of compatriots on both sides of the Taiwan Strait. We will always respect, care for, and benefit our Taiwanese compatriots, continue to promote cultural, educational, medical and health cooperation, social security, and public resource sharing between the two sides of the Taiwan Strait, and enable more Taiwanese compatriots to work, start businesses, work, and live in mainland China, making more "home trips" across the Taiwan Strait possible.