KeepHealthCare.ORG – Hong Kong Tatler x Leonard: Giving Back With Ava Kwong
A glance at prominent breast cancer surgeon Ava Kwong’s demanding resume—she currently serves as director of the Tung Wah Hospital Breast Centre, chief and clinical associate professor of the Breast Surgery division and assistant dean at the University of Hong Kong, and honorary consultant in breast surgery at Hong Kong Sanatorium and Hospital—just to name a few—and one will be even more impressed that she has any time for charitable work.
But the role of philanthropist is perhaps the one dearest to her heart. In 2007, faced with the lack of resources and knowledge of hereditary cancers in the city, she founded the Hong Kong Hereditary Breast Cancer Family Registry (HKHBCFR), a charitable organization and research platform that aims to bring in genetic testing for families at risk of breast, ovarian and prostate cancer. To date, the registry has supported over 3,000 families for genetic testing.
And there is a lot more to be done, Ava explains, as we sat down to talk about the register’s upcoming developments and where her charitable ambitions all started.
When did you first start volunteering?
I started volunteering as a teenager, when during school holidays I did voluntary work in schools for special needs children. Later as I graduated as a doctor I was also involved in mentorship programmes to share my experiences with my mentees. I established the Hong Kong Hereditary Breast Cancer Family Registry, which is an NGO as well as an academically based registry, in 2007.
What drives you to volunteer?
This is never an easy question to answer. I believe this is the way I have been brought up by my parents, to always give and be generous to other people. My experience being in the medical field certainly strengthened this as I do serve a lot of patients from the public sector. One realises that what we have cannot be taken for granted, that many have to live with close to nothing and others have to battle when health fails them.
Tell us about the Hong Kong Hereditary Breast Cancer Family Registry and your role there.
I am the founder and chairman; HKHBCFR is not only an NGO but also a registry collecting information from families who are at hereditary risk of breast, ovarian and prostate cancer, so that research work in collaboration with academic centers locally including the University of Hong Kong and internationally including Stanford University School of Medicine can be done.
Our work includes supporting high-risk families for genetic counselling and testing, training of medical personnel in the field of genetics, public awareness and education, supporting preventative and screening programmes for those who have a hereditary risk for such cancers and an recently we launched a drug programme for ovarian cancer patients where we sponsor targeted drugs which specifically work for BRCA-related ovarian cancers to the underprivileged so they can get access to the medication.
Tell us about Hong Kong Hereditary Breast Cancer Family Registry—how did the idea come about?
The Hong Kong Hereditary Breast Cancer Family Registry was initially set up for research reasons. Not much was known about the hereditary cause of breast cancer in 2005 in Hong Kong and Asia, nor was there genetic testing offered here. I also realised when I was in the USA that in Hong Kong although we have a Comprehensive Hong Kong Cancer Registry, there was no such thing as a ‘family registry’, a registry not only of the cancer patient but family members as well, which is particularly important in a high risk and hereditary setting. So with the help of the National Institute of Health Grant, the HKHBCFR was set up.
On my return, I realised that genetic testing is not affordable by many, not readily available and the knowledge of hereditary cancers was really minimal. Although there are many cancer-related NGOs in Hong Kong, there was none specifically raising funds for this high-risk group of individuals nor for translational based research. I was very lucky to have met a person at the time who has greatly experienced in NGOs and persuaded me to set up HKHBCFR, especially at a very lower administrative cost so that more patients and families can benefit.
What are the biggest challenges you’ve faced in your philanthropic work?
Firstly, there is always some confusion amongst all different cancer-based NGOs; it takes a bit of time to explain our work which specifically targets high-risk groups but over the years this has become easier as more people understand our work. Keeping the administration cost low also always takes effort, which means we have to keep staffing low, ask for support from many commercial companies and also getting venues for public awareness at a low cost as well.
After ten years of work, the next challenge will be expanding. For the next ten years we will need to expand into more services, such as the ovarian cancer drug programme that we just launched, to further build up help to the community.
To gain loyalty from philanthropists is also not easy as there are many choices. Our aim is to look after high-risk patients and families and ensure early diagnosis/prevention, and those who benefited from us tend to do well; hence it is hard to pass on the importance of our work as there are not many sad stories (our aim is to prevent sad stories occurring and to be one step ahead). Moreover, to many, research sounds too distant from impacting their lives, but it is research that can change our medical practice. In fact, our research work has already translated into clinical practice. This again is not the easiest to convey but certainly, over the past decade, more philanthropists are becoming more familiar with our work.
What do you have planned for the future?
We will include more community-based work to support high-risk managements which is still not covered by public hospitals. These will include high-risk screening and prevention support, new targeted drug programmes, community-based psychosocial support of the high-risk families.
On the research front, we will be translating what we have learned in Hong Kong to work on research in mainland China so we can better understand hereditary causes of breast, ovarian and prostate cancers. To date, we already have the largest comprehensive database for Chinese cohort and we aim to expand on that.
What are your most important values?
I believe in happiness brought about by being caring and having compassion: one has to appreciate one’s experiences, good or bad, as there is a reason for something to happen in order to get to the goal of our life’s mission. Hence it is important to be optimistic, and be dedicated and never give up even at times of difficulties and disappointment.
To donate or learn more about the Hong Kong Hereditary Breast Cancer Family Registry, visit asiabreastregistry.com
Giving Back is a column featured and developed by HongKongTatler.com in partnership with Leonard. The aim of this series is to identify women and highlight the charity they support to bring a greater awareness and understanding of their cause.
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