Publications & Media

News Report by AM730

BACK

The TV program named 《A Wall-less World V》broadcasted by RTHK every Sunday illustrates the experience and lives of the disables and their families. The program always echoes noises in the society. The program normally invites professional actors to be the parents but the latest episode named ‘Angel’s Poem’ was acted by two new faces. They are green in acting but their natural and touching performance told us that they are the parents of the little girl, the main character, who is suffering from Angelman Syndrome. As the girl is afraid of strangers, the parents are devoted to participate in the shooting.

Angelman Syndrome is a neuro-genetic disorder caused by the damage to the 15th chromosome. Most patients cannot walk well or talk and they always show a happy face but will be also suffered from epilepsy easily. We have limited understanding to the disease and there are only tens of people diagnosed with Angelman Syndrome in our society. Therefore, the parents in the programme established the Hong Kong Angelman Syndrome Foundation to support other angel families and to arouse public awareness.

According to the WTO standard, any disease that has 6.5-10 diagnosed cases in every 10,000 people will be classified as rare disease.

Other than Angelman Syndrome, there are more than 6,000 known rare diseases in the world. The commonly known rare diseases include Mucopolysaccharidoses, Pompe Disease, Infantile Cutaneous and Articular Syndrome, Marfan Syndrome, Tuberous Sclerosis Complex, various forms of Osteochondrodysplasias, Spinocerebellar Atrophy and Muscular dystrophy etc.

I met with some representatives from various rare disease mutual-aid organizations two weeks ago to understand the patients’ needs. They said some pharmaceutical companies invited patients to try new drugs so that their situations can be under control or eased and they are able to enjoy normal daily lives. Yet, it is difficult for the patients to afford the expensive drugs which may cost HK$200,000 every month as most drugs are not subsidized by the government or the Hospital Authority. As a result, they can only rely on different charity foundations. Hong Kong owns an advanced and developed medical care system but the protection and support on rare diseases is far behind other countries. There is no clear definition or a list of rare diseases while the Hospital Authority only subsidizes the drugs for 6 rare diseases. Therefore, we urged the government and Hospital Authority to identify the definition of rare diseases immediately and add more rare diseases-related drugs to the HA Drug Formulary and extend the subsidize range of these drugs.

The Hong Kong Council of Social Service and a few rare disease organizations are going to submit relevant proposals to the government. If you have any views about the issue, please send your feedback to us.
Angel’s Poem
To watch the episode, search for 《A Wall-less World V》at the ‘TV Section’ on RTHK’s website www.rthk.hk.

AM730 | 10-11-2015