JD Health Serves Over 24,000 Rare Disease Patients in One Year, Bridging the Last-Mile Care Gap
“Over 7,000 diseases,” “more than 300 million patients worldwide,” “50% of patients are children”... On February 27, at the event commemorating the first anniversary of the launch of the JD Pharmacy Rare Disease Care Center and the press conference for JD Health’s Rare Disease Full-Ecosystem Service Strategy, the release of the “2022 China Rare Disease Industry Trend Observation Report” by Frost & Sullivan and the Pain Challenge Foundation highlighted the often-overlooked reality of the rare disease community. The report also revealed that 70% of healthcare professionals believe they lack sufficient understanding of rare diseases, and in some provinces, more than 80% of patients must travel to major cities in other provinces to receive treatment and access relevant medications.
In fact, in recent years, with the continuous deepening of the construction of China's medical security system, and through the joint efforts of the whole society and all industries, China has made breakthrough progress in the field of rare diseases, and the plight of patients with rare diseases has been alleviated to a certain extent. However, many patients with rare diseases are still troubled by problems such as difficulties in diagnosis and medical treatment, limited access to medicines, and challenges in medication payment.
Building on this foundation, and to further help alleviate the pain points faced by patients with rare diseases, JD Health announced at the press conference that, after more than a year of accumulation and refinement, it will continue to collaborate with stakeholders across the industry chain to comprehensively deepen and jointly build an all-encompassing ecosystem service system for rare diseases integrating “medical care + pharmaceuticals + services + payment.” This initiative aims to establish a comprehensive rare-disease ecosystem service platform, providing one-stop services for the market launch of domestically approved rare-disease medications, and further focusing on improving accessibility to rare-disease treatments, payment solutions, and support services, thereby delivering more comprehensive and robust assistance to the rare-disease community.
(“JD Health Rare Disease Full-Ecosystem Service Strategy” Launch Ceremony)
(Jin Chunlin, Director of the Shanghai Health and Development Research Center, shared insights at the press conference)
The “Opinions of the Central Committee of the Communist Party of China and the State Council on Deepening the Reform of the Healthcare Security System” point out that “we should promote the development of a multi-tiered healthcare security system and explore mechanisms for ensuring access to medicines for rare diseases,” and “fully establish a healthcare security system in which basic medical insurance serves as the mainstay, medical assistance provides a safety net, and supplementary medical insurance, commercial health insurance, charitable donations, and mutual medical aid develop in concert.”
In recent years, numerous institutions in the healthcare and insurance industries have actively responded to policy calls, striving to collaborate on building a safety net for rare diseases. For instance, over the past year, JD Health has fully leveraged its technological advantages, resource strengths, and service capabilities in the internet healthcare sector to support the development of a multi-tiered rare disease protection system across all scenarios, thereby becoming an important complementary force within the social security framework for rare diseases.
On one hand, JD Health has established a more comprehensive, efficient, and precise system for rare disease education and patient support, raising public awareness and attention toward rare diseases. For instance, in 2021, JD Health invited numerous experts from top-tier hospitals—including Peking Union Medical College Hospital, Beijing Children’s Hospital affiliated with Capital Medical University, and Ruijin Hospital affiliated with Shanghai Jiao Tong University School of Medicine—who have long been dedicated to the treatment of rare diseases. These experts conducted live educational sessions on conditions such as Fabry disease, porphyria, and retinoblastoma, actively promoting societal engagement and enabling precise outreach to rare disease patients, thereby enhancing service efficiency.
On the other hand, by leveraging the time- and space-independent nature of internet-based healthcare services, connections between patients with rare diseases and high-quality medical resources have been established, comprehensively improving the efficiency of diagnosis, treatment, and rehabilitation for these patients while reducing societal healthcare costs. Statistics show that in the year since the launch of the “JD Health Rare Disease Care Initiative” ahead of International Rare Disease Day in 2021, more than 24,000 patients with rare diseases have purchased medications for rare diseases and received corresponding pharmaceutical care services through JD Health. Notably, nearly 70% of these patients have continuously accessed rare disease-related health management services through the “JD Pharmacy Rare Disease Care Center.”
(Wang Yiting, Head of the Pharmaceutical Business Division at JD Health, introduces the one-year practical achievements of the “JD Pharmacy Rare Disease Care Center”)
As is well known, the research and development of orphan drugs is characterized by high difficulty and long cycles, making it consistently challenging to meet patients' clinical needs. On the other hand, due to the dispersed distribution of patients with rare diseases and the concentration of orphan drug resources in major cities, patients face varying degrees of challenges regarding the time and cost associated with medication access. Therefore, improving drug accessibility has become one of the most urgent issues to address in the prevention and treatment of rare diseases.
Moreover, compared with conventional drugs, most orphan drugs have special requirements for storage, transportation, and distribution, necessitating dedicated systems such as cold-chain logistics. In addition, the approval and market launch processes for orphan drugs are more complex than those for other pharmaceuticals, which further contributes to difficulties patients face in accessing these medications.
Against this backdrop, to help address medication access challenges for patients with rare diseases, JD Pharmacy has leveraged its highly competitive pharmaceutical supply chain capabilities since 2021 to effectively promote nationwide, equitable availability of a broader range of rare-disease medications. In the process, it has built and refined end-to-end support services for new and specialized rare-disease drugs, establishing itself as the “first stop” for the market launch of approved rare-disease therapies in China.
(At the press conference, representatives from multiple pharmaceutical companies participated in a thematic discussion on “Corporate Power Contributing to the Co-creation of the Rare Disease Ecosystem”)
Among these initiatives, JD Health Pharmacy has actively accelerated the market launch of rare disease medications approved in China by collaborating with numerous domestic and international pharmaceutical companies specializing in rare diseases. For instance, novel rare disease drugs such as Mayzent (siponimod), an innovative therapy for multiple sclerosis under Novartis Pharmaceuticals, and Firazyr (icatibant acetate injection), introduced by Takeda China for the acute treatment of hereditary angioedema (HAE), were both launched online for the first time on JD Health Pharmacy. Currently, JD Health Pharmacy covers nearly 70% of all rare disease drugs marketed in China, establishing itself as the online retail channel with the most comprehensive rare disease medication portfolio nationwide.
To address the distribution needs of medications for rare diseases, JD Health has continuously upgraded its “self-operated cold chain” pharmaceutical service model, providing an integrated online-to-offline supply chain solution from warehousing to delivery. As of the end of December 2021, the “self-operated cold chain” capabilities of JD Pharmacy covered more than 200 cities, enabling patients in these areas to access cold-chain medications for rare diseases at the earliest opportunity.
Building on this foundation, JD Health has established an “information bridge” between patients and pharmaceutical companies by launching the “JD Health Clinical Trial Patient Recruitment Center.” By integrating online resources with offline capabilities, the platform helps patients precisely identify clinical trial projects for rare disease medications, thereby accelerating and enhancing the efficiency of new drug development while further expanding patient access to novel and specialized treatments for rare diseases. Additionally, for medications approved abroad but not yet in China, patients can submit their medication needs through the “Wish List” feature. Through deepened collaboration between JD Health and pharmaceutical enterprises, joint efforts will be made to actively expedite the regulatory approval and market launch of these overseas-approved rare disease drugs in China.
Furthermore, JD Health has collaborated with ecosystem partners to innovate multi-party payment models. In addition to establishing the “Rare Disease Care Fund” in partnership with the Pain Challenge Foundation and providing direct charitable medication assistance to patients with rare diseases, JD Health has joined forces with numerous brand merchants on its platform to launch the “Love Dongdong” initiative. This innovative philanthropic assistance model aims to alleviate financial burdens for more patients and provide one-stop services. To date, the JD Health Rare Disease Care Fund has received aid applications from over 800 patients. Including the ongoing third batch of projects, the fund has completed three rounds of patient assistance reviews, providing aid to 123 patient instances and disbursing direct grants exceeding RMB 1.1 million. Within just three months of its launch, the “Love Dongdong” project has attracted over 2,000 participating stores and sold 1.3 million “charity” items.
For most patients with rare diseases, the challenge is not limited to “difficulty in accessing medications”; they also face prolonged treatment and rehabilitation. This means that what these patients need extends beyond medication to comprehensive, long-term care services. Over the past year, building on its efforts to help patients with rare diseases “locate medications, afford them, and find appropriate medical care,” JD Health has focused on developing a one-stop patient care service, which is increasingly becoming a strong support throughout patients’ recovery journeys.
In 2022, to further address the “last-mile” needs of patients with rare diseases, JD Health will continue to enhance its service capabilities for this patient population. First, the “JD Pharmacy Rare Disease Care Center,” launched in February last year, has undergone a comprehensive upgrade, enabling it to provide a range of services for patients with rare diseases, including self-testing and early warning, doctor-patient interaction, AI-assisted diagnosis, precise medication management, intelligent nursing care, and follow-up plans.
Secondly, in collaboration with the Pain Challenge Foundation and patient organizations for various diseases, we have established “Single-Disease Patient Care Service Groups” to provide more comprehensive whole-process rehabilitation and care services to JD Health’s rare disease medication users and applicants of the Rare Disease Care Fund. The first phase has now launched patient service groups for four major rare diseases: epidermolysis bullosa, neuromyelitis optica, amyotrophic lateral sclerosis, and idiopathic pulmonary arterial hypertension, offering services such as charitable assistance consultation, patient Q&A, patient activities, and popular science content.
In addition, JD Health will continue to collaborate with partners such as pharmaceutical companies and foundations to continuously enhance its medical and healthcare service capabilities aimed at accelerating diagnosis. It will gradually launch and refine new service features, including “Cloud-Based Renowned Specialists for Rare Diseases,” “Rare Disease Cloud Classroom,” and “Rare Disease Genetic Testing.” JD Health will also establish a dedicated training zone for physicians on rare diseases, aiming to improve awareness among primary care doctors, shorten the time to diagnosis as much as possible, and help patients with rare diseases enter treatment and rehabilitation phases more quickly.
(At the press conference, multiple partners participated in a thematic discussion on "The Real-Life Situation of Rare Disease Patients and Their Unmet Needs")
“Rare diseases are not only a medical issue but also a social one. By partnering with multiple stakeholders, we are continuously exploring multi-party cost-sharing models and charitable assistance programs. We hope these advancements and initiatives will gradually fulfill our original aspiration and create more tangible value for the rare disease community,” said Jin Enlin, CEO of JD Health. “Looking ahead, we aim to mobilize broader societal resources to continually improve the comprehensive ecosystem for rare diseases—integrating healthcare, pharmaceuticals, services, and payment solutions—thereby providing stronger support to patients with rare diseases and raising greater awareness and compassion across all sectors of society.”
