‘I am just a housewife. The reason why I established the Association is just that I wish my daughter could take what the medicine that she needs.’ said Rebecca, the Chairlady of Tuberous Sclerosis Complex Association of Hong Kong (TSCAHK).

In Hong Kong, approximately 300 people suffer from Tuberous Sclerosis Complex. As the medicines for the congenital disease are costly, many patients just cannot afford them. Rebecca believes that the value of life should not be measured by money. Thus, in 2015, she established TSCAHK. Through connecting patients, the media, doctors and nurses to fight for the subsidies of purchasing medicine. Recently, to nurture more doctors specialising in this chronic disease, the Association subsidised local medical students to join international conference.

Yoyo, Rebecca’s daughter, is 23 years old now. When she was 5 months old, she was diagnosed Tuberous Sclerosis Complex. At that time, every doctor Rebecca approached said that it was an incurable disease.  She therefore contacted some doctors in the USA, and had Yoyo received a brain surgery there. Since then, Yoyo was required to take medicines to control the illness.

When Yoyo was 17, doctors in Queen Mary Hospital referred Yoyo to a new medicine trial scheme.  Though hope is at the door, the pilot would last for 9-month only.  Rebecca thus  set up TSCAHK with 5 patients and carers to fight for the inclusion of the new drug into the list of subsided medicine. ‘The social workers told us that we need to present our stories to the media and let them express our wishes to the government.’

“’You want to live on others’ mercy, or stand up on your own feet?’  As time evolved, an increasing number of patients and their parents came out for interviews.   Our relationship with the community is an interactive one.”

In 2017, one of the patients Ms. Chee Yin Lan, who has just given a speech at the Legislative Council meeting 2 weeks before, passed away.  The incident rocked the society.  The Hospital Authority immediately included those drugs in the HA Drug Formulary.  However,  the price of the medicines was still too high that most of the families just couldn’t afford them. The Association connected the pharmaceutical company and professors in QM to launch a 2-year-medicines research. Ultimately, HA approved the medicine subsidisation. Patients who meet the criteria can pay just $15 per month to have the drugs.

A few years ago, the Association started sponsoring local medical students to join  international conferences for Tuberous Sclerosis Complex. William and Dorothy, who were both medical students back then joined the forum a few years ago. Dorothy said many foreign professionals found it astonishing that the patient group in Hong Kong was so generous in supporting medical students to join the conference.  William said that, foreign professionals would discuss how to deal with the side effect of the medicine.  As an attendant, they would tidy up the information and explain to the caregivers when returned home.  With patients & doctors hand-in-hand to fight for medicine, the general public can know more about the diseases and help the patients to get a new page of life.
Website of TSCAHK: https://tscahk.org/

The HKSR Patient Mutual Support Centre

The HKSR Patient Mutual Support Centre is charged with the mission to support self-help organisations and mutual aid groups, assisting patients and carers of the same disease in promoting mutual aid among members and advocating for patient rights.

Services of the Centre includes the provision of trainings for members of self-help organisations and mutual aid groups so that they can perform effectively in their roles. At the same time, the Centre cares about member’s physical and emotional needs and accompanies them to face every challenge.

For more stories about patients’ self-help groups, please click https://shohub.hksr.org.hk/engagement_category/shointerview.