1. China's first approved gene therapy for hemophilia, Xinjiuning, developed by Belief BioMed, failed to sell a single dose in the 16 months following its April 2025 approval [para. 1][para. 3]. The treatment was priced at 2.8 million yuan ($416,000) per injection, earning it the label of China's most expensive drug [para. 3]. Domestic sales had initially been handed to Takeda Pharmaceutical, which had an established hemophilia business [para. 2].
2. In June 2026, the price was halved to 1.4 million yuan, and in August of that year Belief BioMed and Takeda ended their three-year sales agreement, with the first prescription written in Tianjin the following month [para. 4][para. 20]. The companies described the split as amicable, though Takeda's China operation had undergone upheaval, including the departure of its China president Shan Guohong in June 2025 [para. 21].
3. Xiao Xiao, the 69-year-old co-founder and chairman, is a scientist-turned-entrepreneur who studied under prominent AAV researcher Jude Samulski and spent over 30 years at the University of Pittsburgh and University of North Carolina [para. 5][para. 6]. Two companies he co-founded were acquired by Pfizer and Bayer, and he gave up a tenured U.S. position to return to China [para. 6][para. 7]. Xinjiuning research has appeared in The Lancet, The New England Journal of Medicine, and Nature Medicine [para. 7].
4. Hemophilia B is an inherited bleeding disorder caused by FIX deficiency, where patients may bleed spontaneously or after injury, with repeated joint bleeds causing permanent disability [para. 15]. China's 2023 report estimated 2.73 patients per 100,000 people have hemophilia, with 3,782 registered hemophilia B patients from 2007 through 2021 [para. 16]. Standard care requires lifelong, frequent intravenous FIX infusions (maintaining target levels may require at least one infusion daily due to an 18–24 hour half-life) [para. 17]. Replacement treatment is covered by basic insurance, capped at 300,000 yuan per patient annually [para. 18].
5. Xinjiuning has not been covered by China's basic national health insurance or standard commercial plans [para. 11]. It is included in locally offered supplemental plans in Beijing, Chongqing, and Shanghai, but those reimburse only about 30% of its cost [para. 11]. China has yet to bring any cell or gene therapy into its basic health-insurance program, with consequences for patients, companies, and investors [para. 13].
6. Takeda arrived at the original 2.8 million yuan price through an assessment considering R&D costs, manufacturing, dosage, overseas comparables, and the patient population [para. 14]. Xiao argued that "if you calculate the cost over 10 or 20 years, the economics look completely different" [para. 19]. The June price cut made the treatment roughly comparable to Hemgenix, a similar therapy launched in the U.S. in November 2022 at a record $3.5 million [para. 23]. Still, one hematologist called it "an astronomical figure" for many Chinese families [para. 24].
7. Three insurance approaches were proposed to China's National Healthcare Security Administration, but none advanced [para. 25]. One approach would spread payments over several years tied to results—paying the drugmaker 300,000 yuan annually for three years if the patient no longer needs replacement infusions [para. 26]. Another proposal had basic insurance make a one-time 300,000 yuan payment regardless of list price [para. 30]. Xiao said more than 90% of clinical trial patients had no further bleeding, with the longest follow-up at seven years [para. 32].
8. Outcome-based arrangements already exist in China. Fosun Kairos brought Yescarta technology to China as Yikaida, a lymphoma treatment priced at 1.2 million yuan, with a refund plan of up to 600,000 yuan for failed treatment [para. 28][para. 29]. Commercial insurers hesitate to cover rare-disease treatments because patients with hemophilia are "certain to generate claims" [para. 35]. Only 21% of surveyed hemophilia patients had purchased commercial insurance [para. 37].
9. Employer-sponsored group insurance could help, but only about a third of Chinese workers have employer-provided supplemental medical coverage [para. 39]. That route won't help everyone, as repeated joint bleeding can cause disability and unemployment [para. 40]. Huiminbao—locally organized supplemental insurance—remains a possible route, with premiums from a few dozen to 200 yuan and coverage limits in the millions [para. 41][para. 42].
10. Shanghai's Huhuibao plan, the country's largest with 6.45 million members in 2025, illustrates the pressure [para. 45]. Its claims ratio traced a U-shaped path, reaching 96% of premiums in 2025 [para. 47]. Yikaida claims cost roughly 60 million yuan in 2025 and Fabrazyme about 40 million yuan, against a pool of only about 700 million yuan [para. 48][para. 49]. In May 2026, Belief BioMed secured a place for Xinjiuning on Shanghai's Huiminbao drug list [para. 51].
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