Medically reviewed by ChinaCureLink Team
Table of Content
Why This Case Matters
Min Thura(alias), 22, from Myanmar, and Kenji Arai(alias), 54, from Japan, both faced progressive vision loss from LHON after struggling to find an effective treatment pathway closer to home. Their cases show how international patients with rare diseases can reach specialized treatment in China when a medicine is made available through the Boao Lecheng Pilot Zone's special-access framework.
For patients facing a similar rare-disease treatment gap, ChinaCureLink can help review medical records, identify an appropriate treatment pathway in China, coordinate specialist assessment, and manage the practical arrangements required for cross-border care.
Key Takeaways |
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Patient Background
LHON, or Leber Hereditary Optic Neuropathy, is a mitochondrial genetic disorder that primarily affects the optic nerve and can cause rapid, progressive loss of central vision. The condition is maternally inherited and is more common in males.
For years, patients across China and neighboring Asian countries had limited access to targeted treatment. Supportive approaches such as nutritional supplementation and physical therapy could be used, but they did not provide a disease-targeted treatment pathway for LHON.
Min Thura(alias) had already consulted doctors in Myanmar and Thailand. He was told that there was no available treatment that could address the underlying disease. Searching online for another option eventually led him to the Boao Lecheng Pilot Zone.
Kenji Arai(alias) was a frequent traveler to China and learned about the availability of treatment through friends and family. He also traveled to China to pursue access to idebenone.
Both patients arrived at a point where the timing of treatment mattered. LHON can progress rapidly, making early specialist assessment and treatment particularly important for preserving remaining visual function.
The Care Team and Approach
The patients were evaluated by a multidisciplinary ophthalmology team combining specialist input from China with on-site clinical care in Hainan.
For this case study, the participating physicians are referred to by pseudonyms: Dr. Gao Yichen,(alias) a senior ophthalmology specialist providing specialist guidance; Dr. He Min,(alias) an ophthalmology expert involved in multidisciplinary assessment; and Dr. Qiao Rui,(alias) who led the local treatment team.
The clinical assessment focused on three key factors: the patient's LHON genetic subtype, how long the disease had been present, and the extent of existing visual impairment. These factors helped the team determine whether each patient remained within an appropriate therapeutic window for idebenone.
The treatment used was Raxone (idebenone) 150 mg. Idebenone is a synthetic analogue of coenzyme Q10 that acts on mitochondrial energy production. In LHON, the treatment is intended to support mitochondrial function and help preserve visual function; it is not a cure for the underlying genetic disorder.
The treatment's availability in Hainan was enabled through the Boao Lecheng Pilot Zone's special-access framework for imported medicines urgently needed for clinical use. Under Hainan's regulatory framework, qualifying medicines approved overseas but not registered in China can be imported for use at designated medical institutions when the relevant requirements are met.
Treatment Timeline/ Process
In Myanmar
Min Thura(alias), 22, developed LHON and sought medical advice in Myanmar.
He also consulted doctors in neighboring Thailand.
He was unable to find an available targeted treatment pathway locally.
An online search led him to the Boao Lecheng Pilot Zone in Hainan.
In Japan
Kenji Arai(alias), 54, was diagnosed with LHON.
As a frequent traveler to China, he learned about the treatment opportunity through friends and family.
He traveled to Hainan to pursue access to idebenone.
In China
Both patients underwent specialist evaluation after arriving in the Boao Lecheng Pilot Zone.
The multidisciplinary team reviewed their LHON genetic subtype, disease duration, and degree of visual impairment.
Both patients were assessed as being within the therapeutic window for idebenone treatment.
They received Raxone (idebenone) 150 mg under the specialized clinical-access pathway.
Both patients tolerated the treatment well and returned home after treatment.
Outcome
Both patients tolerated idebenone treatment well and returned to their home countries following treatment.
Their cases do not establish a cure or complete restoration of vision. Instead, they demonstrate access to a disease-targeted treatment designed to help stabilize visual function and preserve remaining sight in patients with LHON.
The wider treatment pathway has since expanded significantly. Additional reporting indicates that the Hainan facility had treated 100 LHON patients with Raxone by August 2026, seven months after the treatment's regional introduction.
Clinical evidence also supports idebenone's potential to improve visual outcomes in some LHON patients. A prospective study of Japanese LHON patients found that 33.3% of participants with the common mt.11778 mutation showed improved best-corrected visual acuity after 48 weeks of treatment. These results are general clinical data and are not the individual outcomes of the two patients described here.
How ChinaCureLink Can Help International Patients to Access This Treatment
For international patients with LHON who cannot readily access targeted treatment in their home country, ChinaCureLink can help establish whether treatment in China is appropriate and available.
The process begins with a review of the patient's medical records, genetic testing, ophthalmology reports, visual assessments, and treatment history. ChinaCureLink can then coordinate specialist review, identify an appropriate hospital and treatment pathway, arrange appointments, and support the practical requirements of traveling to China for care.
For rare diseases where treatment availability differs significantly between countries, early case review is especially important. A specialist assessment can determine whether the patient meets the clinical criteria for the treatment pathway and whether access remains appropriate at the time of travel.
Get a Second Opinion Before Fly to China
For suitable cases, ChinaCureLink can then coordinate an online consultation with the specialist to discuss the technical treatment details directly. The purpose is to help the patient understand which treatment option and which specialist center may be most appropriate before making an international treatment decision.
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Frequently Asked Questions
Can international patients with LHON access Raxone (idebenone) in China?
Access may be possible through the Boao Lecheng Pilot Zone's special-access pathway for qualifying imported medicines. Patients need specialist assessment to determine whether the treatment is clinically appropriate and available for their individual case.
How quickly should a patient with LHON seek treatment?
LHON can cause rapid and progressive vision loss, so early ophthalmology assessment is important. Treatment eligibility depends on factors including the genetic diagnosis, disease duration, and existing visual impairment.
What medical records are needed to apply for LHON treatment in China?
A case review typically requires genetic testing confirming LHON, ophthalmology records, visual acuity and visual-field assessments where available, imaging or other diagnostic results, and a clear history of when symptoms began and how the condition has progressed.
About ChinaCureLink
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Disclaimer
This account reflects individual patient experiences, which will vary by genetic subtype, disease duration, degree of visual impairment, and other clinical factors. ChinaCureLink facilitates access to hospitals and treatment coordination — we do not provide medical care ourselves, and this content is not medical advice. Patients and families should consult a qualified ophthalmologist before making treatment decisions.