BEIJING, March 8, 2024 /PRNewswire/ — February 29 marks the 17th International Rare Disease Day. 

The World Health Organization defines diseases with a prevalence of 0.065 percent to 0.1 percent of the total population as rare diseases. 

As of the end of September 2023, around 780,000 cases of rare disease had been registered in China since the inception of a rare disease diagnosis and treatment service information system in 2019, according to the China Global Television Network.

To improve the diagnosis and treatment level of rare diseases and safeguard the health rights and interests of rare disease patients in the country, the Chinese National Health Commission, together with other four Chinese government departments, released the first catalog of rare diseases in 2018. Various localities in the country are implementing policies on medication, health insurance and research according to the catalog.

The catalog was revised in September 2023. It now contains 86 rare diseases of 17 medical specialties, including hematology, dermatology and pediatrics, according to the National Medical Products Administration.   

In 2021, China also for the first time included a rare disease treatment in its National Reimbursement Drug List. These moves together benefited thousands of Chinese suffering from rare diseases, including spinal muscular atrophy (SMA) patient Zhang Jianuo and his parents. 

SMA treatment Nusinersen was included in the NRDL in November 2021 for the first time, which cut the price of the treatment from 700,000 yuan ($97,266) per dose to 33,000 yuan per dose.   

“Me and Jianuo’s father cried when the news was announced. We are truly grateful to the country for showing us that our child has a chance to be saved and has hope,” Zhang Jianuo’s mother Li hui was quoted as saying by CCTV.

Chasing hope

When the first catalog of rare diseases was released in 2008, Ding Jie, who has served as a member of the CPPCC National Committee for 15 years since 2008 and participated in compiling the catalog, was one of the people most excited to hear the news.  

Ding, former vice president of Peking University First Hospital, believed that this catalog was a milestone, and the joint release by five departments is a key demonstration that “the Chinese government is ready to face the rare disease problem,” Ding said. 

During the 15 years serving as a CPPCC member, Ding’s focus has been almost entirely on rare diseases. She had reportedly offered proposals such as the establishment of a rare disease medical security system and regulations for the assistance of rare disease patients. In 2017, she once again suggested that rare diseases be included in the national medical insurance catalog, according to reports at the time by China National Radio. 

When Ding first began her CPPCC journey, the public’s attention to rare diseases was low. “At first, when I spoke at the conference, there were always people around me showing puzzled expressions. But in the past decade, the situation has changed. Whenever rare diseases are mentioned, the members are particularly concerned and want to contribute to solving the problem,” she was quoted as saying in a report of the CPPCC Daily.

“In the past, it was ‘I’ suggesting, but in recent years it has become ‘we,'” Ding was quoted as saying.

During the 2022 two sessions, the Chinese government included “strengthening research of rare diseases and better ensure the supply of medicines” in its yearly work report. This is an achievement thanks to previous efforts of NPC deputies and CPPCC National Committee members like Ding. It is also an encouragement to more political advisors to continue to fight for patients suffering from rare diseases in the future.  

For example, this year, Sun Jie, a member of the National Committee of the CPPCC and deputy dean of the school of insurance at the University of International Business and Economics, will reportedly propose landmark legislation for rare disease drugs to ensure that patients have access to lifesaving medication.  

With the increased awareness of rare disease, increased investment is being made available, and the medical needs of patients are becoming an increasing priority. It is imperative to clearly formulate or introduce a landmark law or special policy for rare disease drugs, and to systematically regulate research and development, Sun told chinatimes.net.

See the unseen

Similar to rare diseases, educational equality of children in remote and impoverished areas is also a focus of Chinese political advisors.

“It is such a good news for children in former underdeveloped revolutionary old areas, ethnic minority autonomous counties, and former key poverty-stricken counties in our province!” Li Xingling, a deputy to the 12nd and 13rd NPC, posted on her WeChat in April 2023, after South China’s Guangdong Province released the special enrollment plan for key universities in 2023, relaxing admission requirements to cover more students in these areas, according to a report on the Guangdong provincial government’s official website. 

The special enrollment plan is one of the preferential policies in China to better promote educational equity and allow more rural students to enjoy high-quality higher education. Li was so happy as the move Guangdong made is an outcome after she submitted a motion during 2022 two sessions to call for adjustment to the plan in order to help more rural and impoverished students to be able to enroll in high ranking universities.  

“Although I am no longer an NPC deputy [since 2023], I am still very happy to see my suggestions being adopted. I will continue to pay attention to this policy. In the future, I will continue to focus on my job, strengthen my responsibilities, and make efforts to promote the high-quality development of basic education in mountainous areas,” Li was quoted as saying in the report. 

Since being elected as an NPC deputy in 2013, Li has never stopped focusing on education. In 2013, she submitted a motion on providing subsidies to teachers in mountainous areas, and in 2015, she proposed increasing the per capita funding for high school students. From 2018 to 2021, she has put forward a total of 25 motions, with 13 of them related to education, according to a report of thepaper.cn in 2022. 

Many rural teachers received subsidies after my motion was adopted, allowing them to teach in rural areas with more peace of mind and reducing talent drain, this is one of the happiest things that happened during my 10 years of service as an NPC deputy, Li told thepaper.cn. 

Crucial pathways to problem solving

According to the press conference of the State Council Information Office on February 29, nearly 4,700 motions and proposals were adopted by a range of government departments, with over 2,000 related policies and measures being introduced, which greatly facilitated the resolution of a series of issues related to reform, development, and the urgent concerns of the people, leading to new achievements in promoting high-quality economic development and ensuring the well-being of the people, the office said. 

“The two sessions play a powerful role in addressing people’s most demanded livelihood issues,” said Su Wei, a professor from the Party School of the CPC Chongqing Municipal Committee. Su has served as a CPPCC member in Chongqing for many years. “Besides my regular duties, I also participate in research and discussions organized by the NPC and CPPCC to investigate issues concerning people’s livelihoods,” he told the Global Times. 

Su noted that because NPC deputies and CPPCC members usually come from different sectors such as healthcare and education, they can delve deeper into problems from their own professional experience, providing solutions to government departments. Therefore, the two sessions indeed play a unique and significant role in resolving medical and educational issues.

Motions and proposals during the two sessions are crucial pathways for addressing issues impacting people’s livelihood, and they’re becoming increasingly effective. First, it is because that governments are placing greater importance on proposals and motions put forward by CPPCC members and NPC deputies. Every year, during the two sessions, government departments are required to inform the NPC deputies, the CPPCC member as well as the public of the progress they’ve made in implementing motions and proposals of the previous year. Second, the quality of motions and proposals is improving, truly reflecting issues impacting everyday people. Furthermore, there are some reward mechanisms and regulations on NPC deputies and CPPCC members, which to some extent encourage them to brainstorm better ideas, according to Su.

SOURCE Global Times