Suffering in Silence: Rare Disease Patients in Asia-Pacific

A new survey from The Economist Intelligence Unit reveals gaps that hinder diagnosis and optimal treatment.

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street scene in Asia on the cover of the EIU rare disease report

While the world copes with a global pandemic, rare disease patients in the Asia-Pacific region “suffer in silence” in their search for accurate diagnoses, according to a new survey from the Economist Intelligence Unit.

See the full report.

The survey of 500 health care professionals, sponsored by CSL Behring, gathered data from Australia, China, Japan, South Korea and Taiwan. The findings of the survey informed a white paper released last week along with five economy snapshots distilling the findings for each market. The report focuses attention on the needs of 258 million people in Asia-Pacific who live with one of 7,000 known rare conditions. The virtual launch event was attended by more than 200 stakeholders, including representatives from 50 patient groups.

Only one-third of rare disease patients receive the best available evidenced-based care due to a lack of clinical guidelines, too few approved medicines and too little funding for testing and treatment, according to the health care providers who were surveyed. Among health care professionals, 14% said they never encountered a rare disease patient, highlighting just one of the challenges HCPs face in correctly identifying and treating people who have rare conditions.

At an online regional launch event, experts urged the five economies – each facing their own individual challenges – to support rare disease education for doctors, nurses and other health care workers. Rare disease patients also need opportunities to be heard. Holistic, nonmedical supports are needed, too, the EIU found, especially for the vast majority of rare diseases for which there is no approved treatment or cure.

“In Asia-Pacific, rare diseases are a challenge because of the staggered level of socio-economic disparities, low government and general awareness, and a lack of momentum in acknowledging and addressing the challenges of patients with rare diseases,” said Dr Ritu Jain, President, Asia-Pacific Alliance of Rare Disease Organisations. “The EIU report clearly highlights a number of areas where improvements are needed but we need a committed and urgent multi-party engagement to make a difference for the rare disease population.”

The research, which can be viewed in depth here, recommends these near-term goals:

  • better collection and use of data
  • enhanced education for health care professionals
  • broader dissemination of available knowledge
  • integration of social care through partnerships with patient representatives.

Commenting on the findings, the editor of the report, Jesse Quigley Jones said, “Our survey of healthcare professionals across Asia-Pacific shows that they clearly need further support to better manage rare diseases, but are willing to collaborate with each other and the patient community to improve the care offered for those living with rare diseases. Health systems are slowly progressing towards more coordinated and integrated care, and a holistic approach in health policy that takes into account both the medical and social needs of the rare disease community is emerging in some economies.”

Peter Chow, Executive Director, Marketing, Medical Affairs and Market Access, Asia-Pacific, at CSL Behring agreed, saying the company wants the report to spark constructive discussions among stakeholders.

“HCPs who participated in the report confirmed the deeply frustrating and complex challenges patients face in their pursuit of a correct diagnosis and treatment for their illness,” Chow said.  “In helping support this research, we wanted to shine a light on these disparities and unmet needs.