Recently, a high-priced gene therapy drug in mainland China has found itself in a predicament of not being able to sell. The drug, once priced as high as 2.79 million Chinese yuan per injection, later announced a significant price reduction of 1.4 million yuan, but as of now, there are still no patients willing to pay for it.
The drug, known as “Bipartite Decoquinate Injection” (Xinjiu Ning), developed by Xinli Medicine, has once again attracted attention in China.
In mid-June, at a conference hosted by the Rare Disease Care Service Center in Tianjin, Xinli Medicine staff openly stated that currently in China, no patients have paid to use the hemophilia gene therapy drug, as patients are all using the drug through clinical trials.
Xie Zuquan, Vice President of Business Management at Xinli Medicine, told Economic Observer on June 18 that they had already reduced the price in early June. Currently, the out-of-pocket cost for patients has been lowered to below 1.39 million yuan. After additional subsidies in some provinces and cities, the cost to patients is around 1 million yuan. Following the price reduction, several patients have inquired about using the drug, and the company is expected to issue the first prescription within months.
This drug is the first approved hemophilia B gene therapy drug in China. It was launched in April 2025 after passing the review and approval procedures, and it is used to treat moderate to severe hemophilia B (congenital factor IX deficiency) in adult patients.
The drug’s selling point is its single-dose administration with long-term functional healing. Clinical data shows a significant reduction in the annualized bleeding rate (ABR) after treatment, stable maintenance of coagulation factor activity, and a significant improvement in quality of life. Compared to traditional replacement therapies, it offers a significant long-term cost advantage.
However, many hemophilia patients are from low-income families, and the high pricing of the drug has become the biggest commercial barrier. Patients generally express that they will not use “Bipartite Decoquinate Injection” mainly because the price is too high, far beyond their family’s affordability. They also want to see longer-term efficacy and safety data.
Hemophilia is a hereditary genetic disease caused by gene mutations, leading to a lack of coagulation factors in the patient’s body. Joints, muscles, and other areas may experience frequent spontaneous bleeding, and in severe cases, the pain could exceed that of childbirth. Repeated bleeding can potentially result in joint disabilities.
Patients supplement coagulation factors through intravenous injections. However, they have to undergo dozens or even hundreds of injections each year, leading to hands with no available injection sites, and needle holes scars that may calcify, making a “crunch” sound when inserting the needle.
Public reports indicate that there are over 400,000 hemophilia patients worldwide, with an estimated 40,000 patients in China based on incidence rates. However, the actual audience for “Bipartite Decoquinato Injection” is far fewer. Although the drug was initially included in various philanthropic programs and charity assistance projects, few patients have actually “ponied up.”
Experts suggest that in the future, there is a need to explore innovative payment models such as “pay-per-performance,” while also promoting the inclusion of more innovative drugs in medical insurance to balance corporate research and development investment with patient accessibility.
On June 20, the topic “China’s most expensive drug reduces by 1.4 million yuan” trended on various platforms in mainland China.
Mainland netizens discussed:
“The research and development cost 210 million, can it break even? No injections have been sold yet.”
“Hemophilia patients have been hoping for this effective drug for so long, but they are still stuck at the financial barrier.”
“This is not a drug for the common people; ordinary people can’t afford this ‘rich disease.’ If they cure the blood disease, and then look at the bill, they probably would have a heart attack from the stress.”