Hong Kong government urged to subsidise drugs for patients with rare genetic diseases
Appeal comes a week after the death of a single mother who failed to get help with cost of expensive medication
Patients groups and lawmakers from all sides have urged the government to subsidise drugs for sufferers of four rare genetic diseases that cost tens of thousands of dollars a month.
About a dozen people attended a rally organised by the Alliance for Rare Diseases and the Tuberous Sclerosis Complex Association outside the government offices in Tamar on Tuesday. They submitted a letter to the undersecretary for food and health, Professor Sophia Chan Siu-chee, appealing for help.
Single mother Chi Yin-lan, 36, died a week ago from a rare genetic disease called tuberous sclerosis complex (TSC), after failing to get a new but expensive medication subsidised.
Chi is survived by a 13-year-old daughter who inherited the condition. There are about 200 sufferers in Hong Kong.
The destructive disease causes tumours to grow in vital organs such as the brain and kidneys. The medication costs around HK$20,000 a month but is not listed under the drug formulary of public hospitals – meaning it is not subsidised by the government.
It is, however, expected to be subsidised for certain cancers in July under the Samaritan Fund, which helps families on low incomes, according to the Hospital Authority.
“The government can spend HK$194 million to celebrate the 20th anniversary of the handover. That’s enough to fund four years of medication for TSC sufferers,” said Rebecca Yuen Pui-ling, chairwoman of the Tuberous Sclerosis Complex Association.
Kong Wong Fung-ming and both her daughters are victims of TSC – her elder daughter died last year at the age of 27. Wong was told by doctors that the latest drug would cost up to HK$30,000, which her family could not afford.
The president of the Hong Kong Alliance for Rare Diseases, Tsang Kin-ping, said that despite years of lobbying the government was not willing to set clear definitions for rare diseases and to formulate policy around it.
“The Hospital Authority has only responded with bureaucratic posturing, saying the efficacy of some of the medicines is not too good, there is a lack of tangible results … and cites cost-effectiveness,” he said.
There are thought to be more than 7,000 rare diseases collectively affecting 1 in 15 people worldwide. Hong Kong has no definition or count of rare diseases, but the alliance estimated there were around 7,500 patients with rare diseases in the city.
Tsang urged the authority to approve medication for four more rare diseases – TSC, Paroxysmal Nocturnal Hemoglobinuria, Atypical Hemolytic Uremic Syndrome and Mucopolysaccharidoses IVA – before the administration’s term ends on June 30.
A spokesman for the Food and Health Bureau said there was an established mechanism to assess new drugs regularly and decide whether to expand the coverage of the drug formulary in order to benefit more patients.
The government had also proposed a new Community Care Fund assistance programme to enable early use of expensive drugs by needy patients and aimed to start accepting applications from August.
In addition, the spokesman said an extra HK$75 million a year had been allocated to meet the increasing demand for treatment.