13 | Our Future
William Chu
Deeply touched
William is a Year 6 medical student studying at the University of Hong Kong. He has been involved in rare disease-related work outside his studies and contributing to the rare disease community for the past 3 years. When asked about why he was interested in participating in this work at the very beginning, William replied that it was because he was deeply touched. He recalls that his first exposure to rare diseases was in a Medical Humanities lecture back in Year 3. At that time, the episode from the ‘A Wall-less World Series’ that was being played recorded the story of how a father of a patient with Angelman Syndrome resigned to take care of his daughter and organise a patient association. At the end of the lecture, the father even visited the lecture hall in person and encouraged medical students to pay more attention to issues related to rare diseases. Deeply touched, William and a couple of his classmates took the initiative to contact their professor and the father, which marked the beginning of their journey in serving the rare disease community.
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“As medical students, we should regard ourselves as companions of rare disease patients - we are not here to help them, but to accompany them.”
‘What can we do as medical students?’
Through getting to know rare disease patients, William realised that a problem they face on their journey of advocacy is the lack of a systematic rare disease database in Hong Kong. He raised a question, “If we don’t even know how many rare disease patients there are in the entire medical system, then where do we even begin with supporting them?” Therefore, William and his classmates set out to compile a ‘Patient Registry’, which aims to record different information about rare disease patients, such as their quality of life, the medical expenses and social resources needed. In addition, they have also participated in different rare disease summit forums and international conferences to firstly, broaden their horizons and enhance their understanding of rare diseases; secondly, establish connections between Hong Kong rare diseases experts all over the world so as to strengthen international relations; and thirdly, simplify complicated academic information into digestible notes to enhance patients’ understanding. These efforts have brought considerable progress in fighting for rare disease patients’ rights. For instance, the current threshold for patients with Tuberous Sclerosis (TSC) to apply for government’s subsidy on medications is extremely high, with no more than 10 eligible applicants. However, the ‘Patient Registry’ project successfully counted that there are a total of 284 TSC patients in Hong Kong, which provided solid and strong evidence for the patient association to fight for a lower subsidy threshold and can in turn benefit more patients.
Companion
William mentioned, “If I have to use a word to summarise my relationship with rare disease patients, I would describe it as ‘companionship’.” On the one hand, these experiences have allowed him to come into contact with many rare disease patients, which made him more ‘down-to-earth’. When he is presented with a case in a clinical setting, what he sees is not only the disease, but the patient as a whole, such as the mental journeys they have gone through and how they wish to be accepted by the society. All these experiences have enhanced William’s sense of mission and motivated him to study medicine well. On the other hand, the professors and doctors William met through rare disease work are very enthusiastic about participating in different patient associations. This inspires him to realise that besides treatment of diseases, the support and overall quality of life are also important to patients. He concluded, “I can clearly see the spirit of ‘companionship’ from the professors and doctors, so I hope that even after graduation, I can continue to follow up on rare diseases work and participate in patient associations outside of my work.”
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“I have always been serving the rare disease community with this belief in mind - there should be equality in the medical system, and we cannot neglect patients just because they are the minority or they are poor.”