On March 4, the two sessions of the National People's Congress in 2022 officially kicked off in Beijing. The health community combed and found that at least three members of the NATIONAL Committee of the Chinese People's Political Consultative Conference submitted proposals related to rare diseases.
Ding Jie, a member of the National Committee of the Chinese People's Political Consultative Conference and former vice president of Peking University First Hospital, prepared four rare disease proposals, including jointly exploring the medical guarantee mechanism for rare disease drugs, continuing to improve the national drug negotiation mechanism for rare disease high-value drugs, incorporating rare disease drugs into commercial health insurance, and establishing a rare disease charity special medical aid fund.
Feng Danlong, a member of the National Committee of the Chinese People's Political Consultative Conference, suggested in his proposal entitled "On Promoting the Construction of a Multi-level Medical Security System for Rare Disease Drugs and Promoting the Development of Rare Disease-related Commercial Insurance" that the construction of a multi-level medical security system should be promoted; while another member of the National Committee of the Chinese People's Political Consultative Conference, Du Liqun, called for continuing to promote more rare disease drugs to reduce prices through negotiation and delay the development of diseases for more rare disease patients.
Members of the two sessions have spoken out for rare diseases, which also reflects the public's great concern for rare disease groups. In recent years, with the full cooperation of national health, drug supervision, medical insurance, science and technology and other departments, the plight of rare disease patients in the mainland has been alleviated to a certain extent. However, the "three mountains" such as the difficulty of diagnosing medical treatment, the difficulty of accessing drugs, and the difficulty of paying for drugs still plague many patients with rare diseases.
In this reality, in order to further alleviate the pain points faced by the rare disease patient group, many enterprises, charities and other social entities have begun to work together to explore a multi-party co-payment model to alleviate the treatment burden of rare disease patients and improve the accessibility of drugs.
Taking Jingdong Health as an example, on February 27, 2022 (the day before the International Rare Disease Day), it was announced that it will continue to work with all parties in the industrial chain to comprehensively deepen and jointly build a full ecological service system of rare diseases "medicine + medicine + service + payment", create a full ecological service platform for rare diseases, provide one-stop service for the industry and users to provide one-stop service for the listing of approved rare disease drugs in China, and provide comprehensive and powerful help for effectively solving the problems of rare disease drugs being accessible, payable, and service accessible.
"Rare diseases are not only medical problems, but more importantly social problems. We have joined hands with multiple partners to continuously explore multi-party co-payment and public welfare assistance models, hoping that these progress and initiatives can realize our original intention step by step and create more tangible value for the cause of rare diseases. JIN Enlin, CEO of JD Health, told the health community that JD Health focuses on a series of initiatives in the field of rare diseases, not only commercial considerations, but also considering how to really help people in need and fulfill corporate social responsibilities more pragmatically.
Actively participate in the construction of a multi-level guarantee system for rare diseases
On February 25, 2020, the CPC Central Committee and the State Council issued the Opinions on Deepening the Reform of the Medical Security System, which pointed out that "it is necessary to promote the development of a multi-level medical security system and explore a drug guarantee mechanism for rare diseases" and "comprehensively build a medical security system with basic medical insurance as the main body and medical assistance as the foundation, supplementary medical insurance, commercial health insurance, charitable donations, and medical mutual assistance for common development".
Under the guidance of this policy, many institutions in the medical and insurance industries have actively responded to the policy call and worked together to build a rare disease protection system.
For example, in the past year, JD Health has given full play to its technology, resource advantages and service capabilities in the field of Internet medical and health care, and has helped the construction of a multi-level security system for rare diseases in all scenarios, becoming an important supplementary force in the social security system for rare diseases.
Also on February 27, 2021 (the day before the International Rare Disease Day), JD Health launched the "Rare Disease Care Plan" and established the "Rare Disease Care Fund". At the same time, Jingdong Health invited a number of experts from Peking Union Medical College Hospital, Children's Hospital Affiliated to Capital Medical University, Ruijin Hospital Affiliated to Shanghai Jiao Tong University School of Medicine and other top hospitals who have long been concerned about the treatment of rare diseases, and conducted live science broadcasts on diseases such as Fabre disease, porphyria disease, retinoblastoma and other diseases, actively promoting social attention and participation, and achieving accurate access to patients with rare diseases and improving service efficiency.
According to statistics, since the implementation of the "Jingdong Health Rare Disease Care Plan" for one year, more than 24,000 rare disease patients have purchased rare disease drugs and obtained corresponding drug services at Jingdong Health, of which nearly 70% continue to obtain rare disease-related health management services through the "Jingdong Grand Pharmacy Rare Disease Care Center". With the characteristics of Internet medical services across time and space, JD Health has realized the efficient connection between patients with rare diseases and high-quality medical service resources.
For a series of practical measures taken by Jingdong Health in the field of rare diseases, Jin Chunlin, director of the Shanghai Health and Health Development Research Center, said, "For the multi-level social security system for rare diseases, Jingdong Health has given full play to the value of corporate participation and become one of the important and effective supplementary forces, which will effectively help the accelerated realization of the availability of drugs, payments and services for rare diseases, and provide more practical and powerful help for rare disease groups." ”
Achieve a nationwide and non-discriminatory supply of drugs for rare diseases
At present, poverty caused by rare diseases occurs from time to time, and a very important reason is that the accessibility of rare disease drugs is very low, which has become one of the most urgent problems in the prevention and treatment of rare diseases.
The reason for the low accessibility of rare disease drugs is that the research and development of rare disease drugs is difficult and the cycle is long, and it is impossible to meet the clinical needs of patients in time; the second is that the approval and listing process of rare disease drugs is more complicated than other drugs, which causes inconvenience to patients to purchase drugs to a certain extent; third, compared with general drugs, most rare disease drugs have special requirements for the storage, transportation and distribution process, and need special systems such as cold chain to support, which is also a major test for the supply chain capabilities of related enterprises.
In this context, in order to help solve the problem of drug purchase for rare disease patients, since 2021, Jingdong Pharmacy has effectively promoted the realization of the national undifferentiated supply of more rare disease drugs, and in the process accumulated and precipitated the whole chain supporting service capabilities for new special drugs for rare diseases, becoming the "first stop" for the domestic approval of rare disease drugs on the market.
Among them, Jingdong Pharmacy has actively promoted the rapid listing of approved rare disease drugs in China through cooperation with many domestic and foreign rare disease pharmaceutical companies. For example, Novartis Pharmaceutical's innovative rare disease drug Wan Lineng (Sinimod), which is used to treat multiple sclerosis, and Fei Zeyou (Etibant acetate injection), which is introduced by Takeda China for the acute onset of hereditary angioedema (HAE), have all been launched online at Jingdong Pharmacy. Today, Jingdong Pharmacy covers almost 70% of the listed rare disease drugs in China, becoming the leading online retail channel for rare disease drugs in the national category.
In response to the distribution needs of rare disease drugs, JD Health continues to upgrade the "self-operated cold chain" drug service model and provides online and offline integrated supply chain solutions from warehousing to distribution. As of the end of December 2021, the number of cities covered by the "self-operated cold chain" capacity of JD Pharmacy has exceeded 200, and patients in these areas can obtain cold chain rare disease drugs for the first time.
On this basis, Jingdong Health launched the "Jingdong Health Clinical Trial Patient Recruitment Center" to integrate online resources and offline capabilities to help patients accurately obtain rare disease drug clinical trial projects, accelerate and increase efficiency for new drug research and development, and help patients further open up new special drug channels for rare diseases. In addition, Jingdong Health has also joined hands with ecological partners to innovate the multi-party co-payment model, and jointly launched the "Love East" innovative public welfare assistance model with many brand merchants stationed in Jingdong to reduce payment pressure and provide one-stop services for more patients.
Up to now, the Jingdong Health rare disease care fund has received assistance applications from more than 800 patients, including the third batch of projects in progress, completed 3 patient assistance audits, accumulated 123 people,000 people, and directly allocated more than 1.1 million yuan; only three months after the launch of the "Love East" project, more than 2,000 stores have settled in and 1.3 million "love" goods have been sold.
In fact, the core competitiveness of pharmaceutical retail is the ability to fulfill contracts in the supply chain. Relying on the strong digital and intelligent supply chain capabilities of Jingdong Group, Jingdong Health has achieved an omni-channel layout in its pharmaceutical and health retail business, which has greatly met the needs of rare disease patients for medication timeliness, thereby helping rare disease patients to better achieve continuous medication, and helping to alleviate the three major problems of rare disease groups diagnosing medical treatment, drug accessibility and drug payment.
One-stop patient services help patients enter the treatment and recovery period faster
For most patients with rare diseases, they not only face "difficulty in medication", but also need to face a long period of treatment and rehabilitation. This means that people with rare diseases need more than just medicines, but also comprehensive and long-term care services.
The one-stop care service for patients that Jingdong Health focuses on in 2021 has provided a strong guarantee for the rehabilitation of more and more patients. It is understood that the "Jingdong Pharmacy Rare Disease Care Center", which was launched in February 2021, has completed a comprehensive upgrade and can provide rare disease patients with a series of services including self-test and early warning, doctor-patient interaction, digital wisdom diagnosis, precision medication, intelligent nursing, follow-up plan, etc.
In the future, Jingdong Health will also cooperate with pharmaceutical companies, foundations and other partners to continuously improve the medical and health service capabilities aimed at accelerating the diagnosis of rare diseases, gradually launch and improve new service functions such as "famous doctors on the rare disease cloud", "rare disease cloud classroom" and "rare disease gene testing"; at the same time, build a special training area for rare disease doctors, improve the awareness of more grass-roots doctors on rare diseases, shorten the diagnosis time of rare diseases as much as possible, and help rare disease patients enter the treatment and rehabilitation period faster.
Jin Enlin said that Jingdong Health hopes to connect with a wider range of social forces, continuously improve the construction of the full ecological service system of rare diseases 'medicine + medicine + service + payment', provide more powerful help for rare disease patients, and also hope to arouse more care and assistance from all walks of life for rare disease groups.