"International Rare Disease Day" falls on the last day of February each year, and this year's February 28th marks the 18th International Rare Disease Day, with the theme "More than you can imagine" and the Chinese theme "Beyond Rare".

There are currently over 7,000 known rare diseases globally, affecting more than 300 million people worldwide, including nearly 20 million patients in China who are battling rare diseases. The rarity, diversity, and complex clinical manifestations of these diseases, which span various disease systems, contribute to the difficulties in diagnosing and treating rare diseases, as well as the low accessibility of medications. Furthermore, the high research and development costs and expensive prices of rare disease treatments often impose a heavy financial burden on patients and their families.

When we focus our attention on the rare disease community, we see that each individual is resiliently fighting against their illness, facing countless hardships and challenges. Today, let's delve into two real-life cases and explore the stories between Yuanxin Huibao and these rare disease patients, feeling the warmth and strength within.

Alagille Syndrome: A Glimmer of Light in the Darkness

Alagille syndrome is a rare genetic disorder that primarily affects the liver, heart, bones, and facial features. Unfortunately, 5-year-old Xiao Hang (a pseudonym) has been diagnosed with this condition. After birth, he developed jaundice, which subsided after three months. However, at six months, he began suffering from itching, which was initially treated as eczema but with little improvement. In 2023, he was diagnosed with Alagille syndrome through genetic testing at the Fifth Medical Center of the PLA General Hospital.

For further treatment, Xiao Hang was admitted to the Ledong Branch of Hainan Provincial People's Hospital on March 29, 2023, and began treatment with "LIVMARLI (Maralixibat®)." This medication is extremely expensive, with a single dose costing 93,750.41 yuan. Fortunately, Xiao Hang's family had previously purchased "Beijing Universal Health Insurance," which includes "LIVMARLI (Maralixibat®)" in its overseas special drug list.

Through the "Beijing Universal Health Insurance" WeChat official account, Xiao Hang's family learned about the claims process and promptly called the claims hotline to apply for special drug reimbursement. With the guidance of dedicated claims personnel from Yuanxin Huibao, they successfully submitted all required documents. After review, it was determined that Xiao Hang was a non-preexisting condition patient, qualifying for a 60% reimbursement rate, amounting to 56,250.25 yuan. Additionally, since the medication was administered at a designated medical institution in Hainan, the drug costs were advanced by the insurance company, enabling direct hospital payment and significantly alleviating the family's financial burden. Xiao Hang requires the medication every 45 days, with the total reimbursement expected to reach approximately 400,000 yuan over the treatment period.

Achondroplasia: Breaking the Chains of Fate

Achondroplasia is also a rare disease that causes children to have short limbs, slow growth in height and weight, and often recurrent lung infections. Six-year-old Tian Tian (a pseudonym) has been deeply affected by this condition. In 2022, he was diagnosed through genetic testing at Shanghai Ruijin Hospital.  

On February 6, 2023, Tian Tian arrived at Ruijin Hainan Hospital, affiliated with Shanghai Jiao Tong University School of Medicine, to undergo treatment with "VOXZOGO (Vosoritide®)." The cost of this single treatment was as high as 254,362.8 yuan.  

Similarly, "VOXZOGO (Vosoritide®)" is included in the overseas special drug list of "Beijing Universal Health Insurance." Tian Tian's family followed the process to file a claim, and Yuanxin Huibao promptly followed up on the case. As Tian Tian is a non-preexisting condition patient, he received a 60% reimbursement, amounting to 152,617.68 yuan, and also benefited from the hospital direct payment service. With a monthly treatment cycle, the total treatment cost within a one-year insurance period is approximately 1.5 million yuan (with an insurance limit of 500,000 yuan).

Yuanxin Huibao: Providing a Safety Net for the Rare Disease Community

"No small group should be overlooked." This philosophy profoundly reflects society's care for the rare disease community and its unwavering commitment to tackling the challenges of rare diseases. It powerfully embodies the values of "putting the people first and life above all." Since its establishment, Yuanxin Huibao has remained steadfast in its mission to "ensure that no one is denied treatment due to cost or access to medication." With a passion for improving healthcare and medication access for the public, Yuanxin Huibao strives to help every family afford effective treatments at a lower cost and enjoy thoughtful, professional health protection services.  

Yuanxin Huibao works across multiple dimensions, continuously advancing medical service upgrades, health insurance innovation, and special drug supply guarantees. Through close collaboration with the Hainan Boao Lecheng Pilot Zone, insurance companies, medical institutions, and pharmaceutical enterprises, it has steadily expanded its overseas special drug catalog. For example, the special medications used by Xiao Hang and Tian Tian were included in the coverage of "Beijing Universal Health Insurance" through these ongoing efforts. At the same time, Yuanxin Huibao has optimized the claims process year by year, creating a digital claims service platform to simplify procedures and improve efficiency, ensuring patients receive timely reimbursements. Notably, the hospital direct payment service eliminates the burden of patients having to pay high drug costs upfront before reimbursement, significantly alleviating financial pressure on families.  

Although the number of rare disease patients is relatively small, they equally desire health and a normal life. Yuanxin Huibao will continue to push for the implementation of more regional initiatives, innovative products, and services, bringing greater hope to the rare disease community. It aims to ensure that every patient feels the care and warmth of society. We also hope that all sectors of society will pay more attention to the rare disease community and work together to create a brighter future for them.