JD Health Launches Rare Disease Care Fund to Improve Treatment Affordability and Medication Access

On February 27, ahead of International Rare Disease Day 2021, JD Health launched the “Rare Disease Care Initiative” to better support and assist individuals with rare diseases. By mobilizing resources from across society, the initiative aims to build an integrated one-stop platform encompassing medical care, pharmaceuticals, insurance, and public welfare services. Leveraging JD Health’s platform capabilities and supply chain advantages, the initiative provides comprehensive rare disease medications and medical services to help address three major challenges faced by the rare disease community: difficulties in diagnosis and accessing medical care, limited accessibility to medications, and financial barriers to medication affordability.

JD Health CEO Xin Lijun stated that the first phase of the “Rare Disease Care Initiative” will focus on establishing two key components: the “JD Pharmacy Rare Disease Care Center” and the “Rare Disease Care Fund.” In the future, JD Health will collaborate with multiple partners to provide greater support to the rare disease community by ensuring medication supply, facilitating accessible medical services, and promoting the development of a multi-party payment system.

 (Guest representatives from JD Health, the Beijing Pain Challenge Public Welfare Foundation, and rare disease-related industry organizations, along with representatives from JD Health’s pharmaceutical partners—including Novartis, BeiGene, Canaan Healthcare, Sanofi, and Pfizer—jointly attended the launch ceremony of the JD Pharmacy Rare Disease Care Center)

Currently, resources for rare disease medications are concentrated primarily in first-tier cities. Patients often face a lack of available medication upon returning to their places of residence after diagnosis and treatment. Internet platforms can effectively break down temporal and spatial barriers, enabling physicians to issue remote refill prescriptions online. Patients can more conveniently purchase the medications they need through online ordering and home delivery services. In the case of the JD Health Rare Disease Care Center, nearly all oral treatments for rare diseases currently marketed in China are available on JD Pharmacy, with many newly launched specialty drugs making their exclusive nationwide debut on the platform. After several years of accumulation, JD Pharmacy has become the online platform with the most comprehensive range of rare disease medications, thanks to its collaborations with numerous domestic and international pharmaceutical companies.

To ensure the safety of pharmaceuticals during transportation, JD Pharmacy has added “self-operated cold chain” drug delivery capabilities, providing an integrated online-to-offline supply chain solution from warehousing to distribution. Leveraging JD Health’s dedicated pharmaceutical warehouses, its nationwide supply chain network, and JD Logistics’ intelligent temperature monitoring platform, JD Health ensures full traceability of drug quality and safety at the most critical quality and compliance control stages. This enables the safe, stable, and rapid delivery of cold-chain pharmaceuticals, thereby improving accessibility to medications for rare diseases.

 (Image of the JD Health Rare Disease Care Center page)

The heavy medical burden is a major dilemma faced by patients with rare diseases. Statistical data show that the average annual out-of-pocket treatment cost for patients with rare diseases exceeds RMB 50,000, and nearly 15% of patients are forced to discontinue treatment due to an inability to afford medical expenses.

To address the aforementioned pain points of patients, JD Health joined hands with the Beijing Pain Challenge Public Welfare Foundation to establish the “Rare Disease Care Fund” under the “Rare Disease Care Initiative,” mobilizing merchants across the entire JD platform to provide tangible charitable assistance to patients with rare diseases.

It is reported that patients with diseases listed in the “First Batch of Rare Diseases Catalogue” may submit assistance applications through channels such as the JD.com app and the JD Health app after obtaining a diagnostic certificate from hospitals accredited by the National Health Commission. Upon approval by the Pain Challenge Foundation, medical expenses incurred for treatment of the condition in accordance with evidence-based treatment protocols may be submitted for aid. Once approved, patients may receive public welfare assistance of up to RMB 50,000 per year.

Wang Yi’ou, Secretary-General of the Beijing Pain and Challenge Public Welfare Foundation, stated, “The ‘1+N Multi-Party Co-Payment Model’ is an industry-recognized and viable payment assurance system for rare diseases. The JD Health Public Welfare Fund represents a beneficial exploration of the online multi-party co-payment model.” The realization of this assurance system requires government leadership to integrate resources from the market, society, and other stakeholders for shared financial responsibility. This approach aims to establish a genuine multi-tiered medication assurance framework for rare diseases, alleviate the treatment payment burden on patients with rare diseases, and improve drug accessibility.

 (JD Health and Beijing Pain Challenge Public Welfare Foundation Establish the “Rare Disease Care Fund”)

Currently, there are 6,000 to 8,000 known rare diseases worldwide, affecting approximately 250 million to 450 million people. It is estimated that China has over 20 million patients with rare diseases. However, only about 5% of these conditions have available treatments, most of which require long-term therapy. In China, patients with rare diseases are dispersed across the country, while high-quality medical resources are concentrated in first-tier cities. The number of clinicians capable of diagnosing rare diseases is extremely limited. Seeking diagnosis, confirmation, and follow-up care in other regions incurs significant costs related to transportation, accommodation, and lost wages. Statistical data indicates that rare disease patients spend an average of RMB 17,000 annually on travel and lost income associated with out-of-area medical visits and medication purchases. The JD Health Rare Disease Care Center has assembled dozens of experts in the field of rare diseases within its dedicated channels for the first batch of 15 rare diseases. By providing multi-scenario medical services through an online platform, it not only facilitates efficient connectivity between doctors and patients but also promotes interaction among medical teams to jointly discuss cases and provide timely medical guidance to patients with rare diseases.

Meanwhile, with social development and progress, the needs of China’s rare disease community are increasingly shifting from basic treatment and physiological needs to psychosocial needs, such as education, employment, and social interaction. The JD Health Rare Disease Care Center provides a communication platform for patients with rare diseases. Through this platform, patients can not only receive authoritative guidance from professional physicians, as well as access disease-related educational materials and medication guidance, but also share their recovery stories and healthcare experiences, thereby fostering a more positive mindset to combat their conditions and embrace life.

“JD Health will collaborate with more pharmaceutical companies, public welfare organizations, and insurance enterprises to jointly explore an online multi-party payment model for the implementation of rare disease coverage policies,” said Xin Lijun. “The purpose of JD Health’s ‘Rare Disease Care Initiative’ is not only to address the practical challenges faced by patients with rare diseases but also to raise awareness and encourage care and assistance from all sectors of society for the rare disease community.”