Currently there are over 7,000 diseases on planet earth. Many international organizations as well as countries and regions such as the WHO, the EU, the USA, Australia, Japan, South Korea and Taiwan already have “rare diseases” as an official category that requires a medical policy to deal with. Hong Kong on the other hand has dithered on this issue and neither the Food and Health Bureau nor the Hospital Authority has an official definition of rare diseases. There is a lack of support and policies to tackle rare diseases. This has made Hong Kong lag behind other international organizations and neighbouring countries.
In promoting the adoption of policies to tackle rare diseases, DAB Legislative Councilor Ben Chan held a “Tea reception to promote rare diseases policy” on 6th October. We invited patients with rare diseases and their families to meet with the media. During the interview, the families of the patients and Ben Chan pointed out that these patients in Hong Kong are facing major problems such as the lack of a comprehensive policy for dealing with rare diseases, the rarity of vital medicines and the exorbitant cost of other medicines. This has caused massive financial hardship for these families. Pre-natal screening for these diseases are also insufficient and the situation has caused unspeakable suffering to these families.
Ben Chan proposes three methods to help patients of rare diseases deal with the pressure from society:
First, the government should officially draw up a definition for rare diseases and to set up a database. This would help provide information to patients, help the formation of specific policies to deal with specific diseases and will help medical researchers.
Second, the government should improve its medicine subsidy policy. The medicines required for rare diseases should be put on the HA drug formulary and lower the threshold for the Samaritan Fund and the Community Care Fund to help subsidize medicine for patients of rare diseases and allow them to receive the treatment they require.
Third, the government should improve its current pre-natal screening services. For example, they should provide non-invasive pre-natal tests and genetic laboratory testing for pregnant mothers. Make pre-natal and genetic testing a regular occurrence for expectant mothers and lower the percentage of infants who have genetic or rare diseases.
Ben Chan added on to the third point that in recent years Hong Kong has had 60,000 live births every year. As non-invasive pre-natal tests costs around $8000 HKD each and government expenditure will increase by $480 million HKD a year, the burden to the treasury caused by providing this test to all mothers is not very high. It can also improve the health of mothers and infants. Ben Chan said that the government has the responsibility to let parents know whether their baby has pre-natal or rare diseases or not without depending on “the luck of the draw”. Therefore these tests have their absolute value to human dignity. Also, compared to traditional pre-natal tests (like extracting amniotic fluid) requires 3 to 4 weeks for the results to come back, non-invasive pre-natal testing only requires 1 to 2 weeks for the results to come back. This obviously is much more convenient for parents today.
Finally, Ben Chan hopes that the HKSAR government will be able to take the petitions and requests of patients of rare diseases seriously and not just give them scant attention like they used to. The government should quickly set up a comprehensive rare diseases policy and provide support to patients and their families.
Media Inquiries: DAB spokesperson on health services Ben Chan (9274 7035)