Jan 21, 2022 09:29 AM

CX Daily: Fixing the High Cost of Rare Disease Treatment in China

The heavy cost of rare disease treatment in China, such as this drug for spinal muscular atrophy, can be financially crippling to patients and their caregivers. Photo: VCG
The heavy cost of rare disease treatment in China, such as this drug for spinal muscular atrophy, can be financially crippling to patients and their caregivers. Photo: VCG

Medicine /

In Depth: Fixing the high cost of rare disease treatment in China

Fourteen years ago, Tongtong was diagnosed with MPS II, a rare disease also known as Hunter syndrome that affects many parts of the body. His condition gradually deteriorated due to a lack of specific treatments, and in late 2019, he became wheelchair-bound, and then he was even unable to stand.

Without an effective treatment, Tongtong’s condition is likely to continue to worsen, and he could suffer from severe organ damage. His mother Liu Xia is desperate to find help.

Amid the cloud of anxieties, there was a silver lining for Liu. The only drug treating the rare disease, Hunterase, appeared on the domestic market last June. But it came with a price tag of 1 million yuan ($157,400) to 2 million yuan annually, a burden that many families cannot afford.


Xiaoshan Power Plant in Hangzhou, East China's Zhejiang Province, on July 16, 2021. Photo: IC Photo

Carbon tax /

China carbon tax needed to mitigate impact of EU’s carbon border levies, experts say

A China carbon tax is needed to offset the increased cost to Chinese exporters from a proposed European Union carbon border tax that’s set to be brought forward, experts say.

Brussels announced a carbon border adjustment mechanism (CBAM), commonly known as the carbon border tax, in July last year as part of efforts to combat climate change. While the transition period of the CBAM was initially set for three years, from Jan. 1, 2023, to Dec. 31, 2025, an amendment proposal published in November shortened the transition to two years ending Dec. 31, 2024.

The EU is the second-largest importer of Chinese goods. After the CBAM comes into effect, carbon tax levied on Chinese goods exported to the EU could amount to as much as $15 billion a year if it only applies to the difference in carbon intensity compared with locally produced products, a Goldman Sachs report published in early 2021 said.

Fintech /

China issues more guidelines on internet giants and fintech

Nine Chinese regulators tightened restrictions on investment in financial institutions by internet platform companies in a joint opinion issued Wednesday.

In the document, regulators including the National Development and Reform Commission, the State Administration for Market Supervision and the Cyberspace Administration of China urged internet platform companies and the financial institutions controlled and backed by them to strictly implement requirements for capital and leverage ratios.

Huawei /

Huawei investment arm registers as private fund manager

Hubble Technology Venture Capital Co. Ltd., a unit of Huawei Technologies Co. Ltd., registered as a private equity and venture capital fund manager, records from industry group the Asset Management Association of China (AMAC) show.

The move highlights the telecommunications equipment giant’s ambition to expand its footprint in the advanced manufacturing investment sector.

Quick hits /

China stocks climb as banks cut borrowing costs

Temasek unit-backed SPAC rises in Singapore trading debut


Refiners operated by Chinese state-owned companies do not require import quotas.

Oil /

China penalizes PetroChina unit for illegal oil trading

China penalized a unit of state-owned oil giant PetroChina Co. Ltd. for long-term illegal trading of millions of tons of imported crude oil.

PetroChina Fuel Oil Co. Ltd., the subsidiary, was cited for illegally reselling 179.5 million tons of imported crude to 115 local refinery companies over the past 15 years, the National Audit Office found. The audit office didn’t put a value on the oil, but at today’s prices, the illegally sold crude would have a market cost of more than $100 billion.

China detains staff from three oil refiners probed for tax evasion

Property /

Property firms face major debt squeeze in first quarter

China’s troubled property firms face a tough first quarter as they have to pay back a record amount of offshore bonds while new home sales are depressed and finding financing remains a challenge, analysts said.

In the first three months of 2022, developers face obligations to repay 117.7 billion yuan ($18.5 billion) in maturing offshore bonds, a record quarterly high, analysts at brokerage Huatai Securities Co. Ltd. wrote in a report last week.

Cyberspace /

Internet watchdog casts doubt on document apparently outlining tough new rules for tech investment

China’s cyberspace watchdog cast doubt on the authenticity of a document that emerged online this week suggesting the agency plans to force large internet firms to seek its approval before raising cash or going public.

“The Cyberspace Administration of China (CAC) has never released such a document. This is false information,” the agency said in a statement (link in Chinese) posted to its official WeChat account, which did not elaborate.

Metaverse /

Blockchain gaming startup raises $359 million as investors go gaga over metaverse

Hong Kong-headquartered blockchain gaming startup Animoca Brands Corp. Ltd. started the New Year with a bang by completing a $359 million funding round that gives it a valuation of nearly $5.8 billion.

The funding reflects growing investor interest in virtual worlds where people can meet up, visit buildings, buy goods, play sports and work together on projects, among other things, via their personalized virtual avatars, an area now known by the buzz term “metaverse.”

Quick hits /

ByteDance scales back investment arm as deal curbs chill China tech

China Aoyuan won’t pay bonds, signals default imminent


Harbin’s giant snowman causes stir online

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