"After being diagnosed in Guangzhou, the doctor didn't know where to help me find medicine." A patient with a rare disease said. This is also the norm for many patients with rare diseases.
There are about 20 million rare disease patients in China, but many pharmaceutical companies still ask a question: Where are the rare disease patients in China?
A person in charge of a rare disease organization told the Health Bureau that due to the lack of relevant epidemiological survey data, rare diseases can only be defined in the form of a catalog for the time being.
During the investigation, the Health Bureau learned that at present, only a few areas such as Guangdong and Hainan have regional drug-seeking platforms, and most other areas in the country are "enterprises can't find patients, patients can't find drugs.".
In addition, although the "soul bargaining" in recent years has a thrilling bargain for rare disease drugs, most of the expensive rare disease drugs have not been covered by medical insurance.
Ma Tao, executive secretary of the Pain Challenge Foundation, told the Health Bureau: In addition to the organization of ours, the specific solutions for rare disease patients and the integration of social resources also need to be done by enterprises.
The advantages of the cold chain are unmatched
Across most of China, it's not always available to go to big hospitals to prescribe medicines — money and time can't stand up to the toss and turns of rare disease families who are already in need.
Pharmaceutical e-commerce and Internet medical care have seen this little-noticed corner.
In September 2017, Jianke.com cooperated with the rare disease organization "Scleroderma Care Home" to carry out drug donation activities and enter the field of rare diseases; in February 2021, Ali Health also set up a "Rare Disease Center" on Tmall. JD Health also launched the "Rare Disease Care Plan" in February 2021, which is committed to solving the problem of difficult medication and payment for rare disease patients.
In the eyes of many patients, hospitals and Internet medical and health companies are two parallel third-party platforms, because they can only get life-saving drugs through these two channels. For pharmaceutical companies, hospitals and Internet medical and health companies have played a role in gathering patients.
However, the hospital system has congenital pain points in this matter, after all, the price of rare disease drugs is high, hospitals are limited by the provisions of "drug proportion", "medical insurance control fees", etc., and some high-priced drugs are not matched.
This gives Internet medical and health companies the opportunity to create greater value.
In February 2021, Novartis and JD Health deepened their cooperation in the field of rare diseases, and locked the online debut of "Wan li Neng" for the treatment of multiple sclerosis in JD Pharmacy.
At the same time, Takeda China, Pfizer, Sanofi, Merck, Novartis, BeiGene, Beihai Kangcheng and other pharmaceutical companies have successively cooperated with JD Health in the field of rare diseases.
As of February this year, Jingdong Pharmacy has launched nearly 40 kinds of rare disease drugs, covering 70% of the rare disease drugs that have been listed in China, and is the most complete online platform for rare disease drugs in the country.
Why is it attracting so many companies to cooperate? The Health Bureau has learned that one of the important factors is that rare disease drugs put forward higher requirements for temperature control and stability of logistics. Jingdong Health covers the self-operated cold chain of more than 200 cities across the country to achieve undifferentiated drug delivery nationwide and ensure the quality and safety of rare disease drugs.
What internet medical and health companies can get
Although rare disease drugs are expensive, pharmaceutical e-commerce terminals and Internet medical treatment do not have much benefit.
Jianke.com, one of the earliest e-commerce companies involved in rare diseases, has hardly made any noise about rare diseases since June 2019; Ali Health's reports on the "Rare Disease Center" are also mostly focused on finding drugs, and there is little information on cooperation with pharmaceutical companies; Jingdong Health also told the Health Bureau: The investment in the rare disease center is done with a public welfare mentality, and there is no return at present.
In fact, for a business, it is dangerous to make the business pure public welfare. However, in the process of promoting the "Rare Disease Care Plan", JD Health has also created a unique opportunity: integrating the resources of all parties, enhancing social influence, and slowly making this matter an ecology.
On February 27, 2022, the "Jingdong Health and Rare Diseases Full Ecological Service Strategy" was officially released
In November 2021, Takeda China moved the special drugs of hereditary edema drugs to Jingdong Pharmacy for online sales, and also carried out cooperative exploration of "Internet + Rare Disease Innovative Ecological Management" with Jingdong Health.
"Ecology" means that it goes far beyond the meaning of simply selling drugs. The Health Bureau learned that Jingdong Health has incorporated insurance into the ecosystem and has begun to explore cooperation with local commercial insurance and inclusive insurance companies. In Wuxi Huiminbao 'Medical Hui Xicheng', Jingdong Health provided reference opinions on drugs for rare diseases.
In addition, Jingdong Health has also brought together front-line diagnosis and treatment resources, and a number of rare disease experts from Peking Union Medical College Hospital, Children's Hospital Affiliated to Capital Medical University, Shanghai Ruijin Hospital and other top three universities have participated in the "Rare Disease Care Plan".
In February this year, JD Health's sales of rare disease drugs doubled compared with last year, and some varieties even increased by more than 10 times.
Such sales data can lay a solid foundation for other cooperation in the ecosystem.
Truly affordable for patients
Admittedly, the Internet solves the problem of buying medicines, but what rare disease families need most is money.
The post-95 Yangyang is a patient with mucopolysaccharide storage disease type I, and in March 2021, the Yangyang family has run out of food and still owes hundreds of thousands of foreign debts. According to the company's rescue plan, he also needs to buy 5 times at his own expense to get the medicine, otherwise he may lose his light forever.
Each special drug of up to 9114 yuan, Laroni enzyme, has become a natural barrier between the ocean and the future.
Families in desperate circumstances have found the "Rare Disease Care Fund" co-sponsored by the JD Health and Pain Challenge Foundation. In the end, Yangyang received the highest level of medical assistance of 50,000 yuan, giving Yangyang a chance to see the world.
For rare disease patients who need long-term medication, 50,000 yuan seems to be a drop in the bucket, but it can bring new hope at critical moments. The Health Bureau learned that the Rare Disease Care Fund is funded by Jingdong Health, the first batch of funds exceeded 1 million yuan, and the third round of fund injection has begun.
For an Internet medical and health enterprise, the greater power is not the platform itself, but the brand stores on the platform that are all over the country. Ma Tao told the Health Bureau that at the end of last year, based on the Jingdong public welfare platform "Love Dongdong", Jingdong Health launched an innovative rare disease public welfare assistance action. For every item sold, the shop donates a few cents or a few cents for medical assistance to patients with rare diseases. "Internet medical and health enterprises do public welfare, can better bring everyone together."
It is the future trend for many forces to jointly build a total ecological service for rare diseases
The Health Bureau learned that as of the end of February this year, more than 2,000 brands relying on Jingdong Public Welfare's "Love Dongdong" have settled in, and nearly 1.3 million related goods have been sold.
Through the above various ways, JD Health has helped a large number of rare disease users. In the whole year of 2021, JD Health has provided medication services for more than 24,000 patients with rare diseases, and many users have directly benefited from the "Rare Disease Care Fund".
This goes far beyond the responsibilities of a healthcare company.
Text | David
Operational | Twenty-thirteen
Two in-depth manuscripts per day to decode medicine and health
#Rare Disease#JD Health #