Letters | Review drug criteria to help Hongkongers with rare diseases
- Readers discuss health equity for patients with rare diseases, and how the city can prevent another pandemic
As Dr Margaret Chan Fung Fu-chun, former World Health Organization director general, once said: “Health inequity really is a matter of life and death.”
Unlike “health equality”, where everyone in society receives an equal share of resources, “health equity” suggests everyone has a fair and just chance to receive the care they need. People will get the most appropriate treatment, but the amount spent on each patient may vary.
This is especially important for rare disease management, in which treatments are often more expensive and the scale of the clinical trials is reduced as the number of patients is smaller. The average amount of resources required for one patient can be higher than that with common diseases.
Last year, Rare Disease Hong Kong appealed for support from charitable organisations to sponsor treatment for an infant patient with a rare genetic disorder. Unfortunately, these organisations turned down our request on the grounds that the same lump sum of donations could benefit more patients with common diseases.