Rare diseases affect approximately 4% of the total world population. Although this percentage may seem small, it equates to over 350 million people, of which, up to 20 million individuals are estimated to be from China. This contradiction, coupled with the scarcity of rare disease cures, results in those with rare diseases often being excluded from public health conversations, in turn leading to a population that has historically been overlooked and undertreated. Increasingly, however, after popular global advocacy movements such as the ALS Ice Bucket Challenge, rare disease awareness has drastically improved. In China, the National government has made the healthcare of rare disease patients a national priority, publishing an extensive list of rare diseases and their indications. In addition, the National Medical Products Administration has been investigating the possibility of fast-tracking regulatory reviews for the registration of rare disease medications. Despite these efforts, there are still significant healthcare barriers that rare disease patients face, many of which, online care centers may be able to address.

The Need for Comprehensive Online Care Centers

Rare disease patients face three unique challenges: long diagnosis times, limited medical specialists and available treatments, and significant financial burden.

• Long Diagnosis Times
  Long diagnosis times remain one of the most debilitating barriers to rare disease patient healthcare, due to a lack of awareness of rare disease signs and symptoms among physicians and the general population. Because of this, rare disease patients generally undergo an arduous diagnosis process as physicians are often unaware of the complicated and multisystem symptoms that rare disease patients have. In a study conducted in April 2021, 78.8% of rare disease patients in China believed they did not receive proper care because of a lack of awareness or knowledge of rare diseases among physicians. This is especially problematic since diagnosing rare diseases at an early stage means that the development of preventative strategies that can vastly improve the quality of a patient’s life can start sooner, especially for the 95% of rare diseases where there are currently no approved treatments.
• Limited Medical Specialists and Lack of Access to Available Treatments
  Due to the scarcity and uneven geographical distribution of medical specialists in China, rare disease patients face significant geographic barriers to treatment. This lack of access due to geographic barriers can make it difficult for rare disease patients to consistently obtain the medications prescribed and required for their treatment.
• Increasing Financial Burdens
  When rare disease patients begin treatment, they often encounter huge financial burdens. Since the percentage of rare disease patients is relatively small, it can be much harder to rally support and resources to develop treatments, ultimately causing a limited supply with much higher prices. In a study on the economic impact of 23 rare diseases in Shanghai, researchers found that the mean direct medical cost for rare disease treatment was ¥9588.27 for inpatients and ¥1060.28 for outpatients, per year, an expense that is much greater than the average family in China can afford. While these numbers represent the mean costs, some treatments incur significantly higher costs. For instance, patients diagnosed with severe congenital neutropenia spent over ¥1.5 million in total for treatment in 2016. While medical insurance can subsidize these costs, currently a national medical insurance system that provides substantial support does not exist, so out-of-pocket expenses for rare disease treatments remain extortionate.

Fintech Solutions to Support Rare Disease Patients in China

Rare Disease Care Centers are a new platform designed specifically for patients with critical or special diseases. One such example is the “Changxiangban Online Care Center” for patients with inflammatory bowel disease (IBD), which was launched on November 8, 2020, by the China Red Cross Foundation and Takeda (China) Investment Co., Ltd. The innovative model they developed committed to creating a new model of “Internet + full-course management system”, covering early screening, diagnosis and treatment, disease education, patient management, personalized care and others. It committed to ensuring more IBD patients in China would have access to efficient disease management, as well as to establish an information sharing system and intercommunication mechanisms, to improve the effects of treatments, and the quality of life.

JD Health, the healthcare subsidiary of JD.com announced they would establish the Rare Diseases Care Project on Feb 27, 2021. JD Health, in collaboration with the Illness Challenge Foundation, announced their goals to establish a rare disease care center to alleviate the burdens of rare disease patients. The Illness Challenge Foundation (ICF) is a Beijing-based advocacy NGO for rare diseases, whose aim is to set up a fund to provide charity subsidies for patients. The JD Health/ICF Care Center is founded on three key pillars in which it aims to provide financial support, encourage community and knowledge building, and access to medication.

The care center aims to collect charitable donations to form dedicated financial aid reserves that patients with rare diseases can apply for through their Rare Disease Care Center, by simply sending in their medical records and prescribed treatment plans. In this way, the organization can allocate funds and resources to those most in need. After being issued with a diagnosis of a disease included in the “First Batch of Rare Diseases Catalog” and in a hospital recognized by the National Health Commission, the patient can submit an application for assistance through channels such as JD or JD Health APP. The application is then reviewed and approved by the ICF. Once the treatment plan for the disease is decided upon and administered to the patient, any medical expenses that are incurred can be submitted for financial assistance. After the review of expenses is passed, the patient can receive up to 50,000 RMB assistance per year.

One of the top priorities of the JD Health/ICF Care Center is the need for community and increased awareness of rare diseases. Their platform provides a space for patients and doctors to share stories and information about their process of diagnosis and treatment. This not only increases awareness of the different aspects of a rare disease diagnosis and treatment, but also develops a community of patients with rare diseases and physicians that can be helpful to those patients that experience isolation as a result of their disease.

It is important to note that JD Health has pharmaceutical affiliations through JD Pharmacy, a drug marketing platform, giving the JD Health/ICF platform a unique position in which it is able to leverage itself as a pharmaceutical product provider. This is extremely advantageous, since through this it is able to increase the accessibility and timely delivery of medications used to treat patients with rare diseases across China.

Care Centers as a Solution

Care Centers offer comprehensive platforms that have the power to address many of the challenges involved with rare disease treatment. By providing a platform for accurate information and for a community of patients and doctors to share their experiences, Care Centers can increase awareness of rare disease symptoms and risk factors, leading to earlier detection and diagnosis. Care Centers can also offer financial support through dedicated financial aid funds set aside for patients, much like the JD Health/ICF platform. Finally, while the JD Health/ICF care center confronts geographical barriers by directly providing pharmaceutical medications, Care Centers can also help bridge the treatment gap through telehealth services. In both ways, the Care Centers ultimately provide those in more rural areas access to care and consultations without having to travel large distances.

Summary

Despite the recent increase in efforts by the Chinese National government to address barriers to the treatment of rare diseases, many still exist that those national policies have yet to address. By investing in private industry FinTech resources, such as Rare Disease Care Centers, we can create comprehensive platforms that address the lack of accurate information about rare diseases, the difficulties of reaching specialized medical care, and the financial burdens of those seeking treatment. The success and development of these platforms will ultimately contribute to a more accessible and well-rounded healthcare system for patients with rare diseases.

Authors: Emily Forden, Intern,  ACCESS Health International China