02 | Our Leader
Sandy Chan
A life of uncertainty
At the age of 2, Sandy’s daughter was diagnosed with hereditary angioedema (HAE). This means she may have to face unpredictable swelling attacks for the rest of her life, causing great inconveniences in daily life. If the swelling happens in the throat area, she may even suffocate. As her mother, Sandy did not only feel overwhelmingly anxious for her daughter’s safety and future; she also felt a sense of guilt for giving this condition to her. Like many parents with hereditary conditions, Sandy was not aware of being a patient herself until her daughter was diagnosed. She has only experienced one suspected attack in her life. However, the situation is much worse for her daughter, who experiences multiple attacks every year.
A struggle for all
When her daughter was first diagnosed, Sandy’s family felt completely alone. At that time, there was no patient group in Hong Kong, nor were there any registered drugs in Hong Kong to treat HAE attacks. The unpredictable nature of HAE attacks resulted in severe disruptions in daily lives of patients - the frequency of attacks varies, and could render patients unable to work or go to school. Even if modern treatments were accessible, it would still be impossible for a normal household to afford these expensive treatments without any subsidies in the long run.
Thankfully, Queen Mary Hospital (QMH) was able to make available medication specifically to treat Sandy’s daughter in the event of a HAE attack, but the medication was not available for Sandy or any other HAE patients. Sandy and other HAE patients needed to find their own HAE treatments (because HAE treatment was not registered in Hong Kong) and pay for treatments themselves.
In Sandy’s daughter’s case, because of the availability of HAE medication at the QMH, any life-threatening attacks could be quickly managed if Sandy’s daughter was sent to QMH immediately. Although not ideal, this did offer Sandy and her family some comfort in knowing that treatment was available in case Sandy’s daughter suffered from a life threatening attack. Slowly, the family was able to plan their lives better and manage the disease (to some extent and with certain limitations).
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About Hereditary Angioedema (HAE)
Cause
C1 esterase inhibitor deficiencies
Inheritance
Autosomal dominant genetic disease
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Prevalence
1 in 50,000
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Symptoms
Sudden swelling attacks in any body part that last a few days
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Effects
Unpredictable swelling affecting all kinds of normal daily activities including breathing
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Treatment
Available treatments for HAE such as C1 Esterase Inhibitor has yet to be included in the Hong Kong drug registry for subsidy; in comparison, these medications have already been registered and widely used overseas.
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"I don’t want the disease to control me or my life. I want to be able to control the disease instead."
There is still a long way to go to improve the quality of life of HAE patients in Hong Kong. HAE patients in Hong Kong still don’t have access to modern HAE medication (even though it is available in other advanced cities in other parts of the world), and even if medication becomes available in Hong Kong, there is a question of how an ordinary household will be able to bear the costs of the medication especially if HAE is a hereditary disease and may affect more than 1 family member (costs of medication to treat one HAE attack per adult is around $8,000. Some patients may suffer multiple attacks every month).
Hence, with the support of HAE international, Sandy along with a group of dedicated patients and doctors founded HAE HK in 2019. Their aim is to improve the quality of life of HAE patients in Hong Kong by raising awareness about HAE in the community, providing a platform to share information and experiences, as well as advocating for access to modern treatments.
The road ahead
Sandy is proud to say that hae hk has succeeded in creating a community for HAE patients and family members to support one another and exchange useful information. Especially for newly diagnosed patients, the journey to understand and manage the condition became less difficult as they are accompanied by warm and supportive people on the same path.
Even though there is still a long way to go, Sandy is determined to create a better future for HAE patients in Hong Kong. She will not cease to raise public awareness about HAE; and she will not cease to fight for access to modern and subsidised HAE treatments.
"We really need the drugs to save our lives. They are already in the market. I can’t see why the government won’t register the drugs."