From Regional Patient Advocate Lim Yong Hao
I began my official Regional Patient Advocate (RPA) journey in June of this year, taking on the responsibility of supporting the countries and Member Organizations in the Eastern Asia region, including China, Taiwan, Hong Kong, Singapore, Malaysia, Indonesia, and Sri Lanka, from Fiona. It was a daunting transition, and I often found myself questioning whether I could fill the proverbial “big shoes” Fiona left behind. Fiona provided invaluable guidance, and I was deeply grateful for the unwavering support of my fellow RPAs and Michal, who has since assumed the Director, Regional Patient Advocate Program role.
In the first three months of my tenure as an RPA for Eastern Asia, I focused on two primary objectives.
First, I dedicated myself to understanding the landscape of HAE in the region. Through extensive conversations with Member Organizations, patients, physicians, pharmaceutical companies, and online research, I
gained a deeper understanding of the specific norms, policies, and systems that would influence public awareness initiatives and access to treatments, as well as the unique challenges faced by Member Organizations in their respective countries. For example, in Hong Kong, I discovered that elderly patients were less inclined to embrace digital solutions, posing a challenge in persuading them to use HAE TrackR. In Singapore, I compiled valuable information from two hospitals; one primarily managed adult HAE patients, while the other focused on pediatric cases. This information included treatment availability, clinical management guidelines, hospital-level initiatives, and plans.
With a clearer picture of the regional landscape, I became better equipped to contextualize HAEi’s efforts, as well as those from other RPAs and Member Organizations, and to distill those relevant or adaptable initiatives to my region. Within the region, I facilitated knowledge sharing among countries and Member Organizations, providing them with a reference point and a source of inspiration. For instance, Indonesia expressed interest in using social media for public awareness, and I shared China’s impressive social media campaigns as a valuable reference. Moreover, I was able to leverage opportunities as they arose. For instance, during a patient meeting in Malaysia, I raised the issue of updating the indication of lanadelumab for younger children in the region, especially in China, which prompted discussions with Takeda representatives. In the future, I aspire to deepen my understanding of the landscape and strive to become the “patient advocate thought leader” for the region, as described by Henrik.
My second objective was to foster the growth of Member Organizations in countries where progress has been limited or where no Member Organizations had been established. In countries with more established Member Organizations, I provided informational support to complement their existing plans. For example, in Hong Kong, HAE HK recently celebrated its fourth anniversary and successfully registered as an organization, enabling them to seek funding from pharmaceutical companies for expanded activities. I offered them a sample sponsorship proposal to streamline their preparation process. In China, I provided HAEi social media resources and offered Mandarin translations to support their social media campaigns.
The most significant highlight of this outreach was the successful execution of the first patient meeting in Kuala Lumpur, Malaysia. The event brought together physicians, patients, caregivers, and pharmaceutical companies, generating tremendous enthusiasm for improving the lives of HAE patients in Malaysia. From this meeting, HAE Malaysia was born, and Mr. Nazim, whose brother is an HAE patient, volunteered to become the National Contact for Malaysia. We also translated HAE TrackR and the Emergency Card into Bahasa Melayu, the common language used in Malaysia, Brunei, and Indonesia, making these resources more accessible. While modern HAE treatments are not yet available in Malaysia, the incident of a patient experiencing rapid relief after receiving icatibant during an attack at the meeting underscored the importance of bringing modern treatments to the country.
In other countries, such as Sri Lanka and Indonesia (and even Brunei, which is currently outside of HAEi support), the strategy focused on gathering leads from patients and physicians outside the countries, pharmaceutical companies, and other sources to identify potential patients. While I obtained numerous leads, some showed promise, while others were less fruitful. If there are any potential leads to patients and physicians in these countries, please do not hesitate to share them with me.
Unexpectedly, over the past few months, both Fiona and I received numerous invitations from pharmaceutical companies and other organizations to speak at various platforms. This development, in hindsight, may not have been entirely surprising, given the outstanding work HAEi has accomplished, contributing to its strong reputation. Fiona is scheduled to speak at the APAAACI Conference in October, hosted by the Asia Pacific Association of Allergy, Asthma, and Clinical Immunology, and at an internal workshop for Takeda in Singapore. In December, I will have the privilege of speaking at the World Allergy Congress in Bangkok. Additionally, Fiona and I will participate in a panel discussion for the ISMPP Asia Pacific Education Committee Webinar (International Society for Medical Publication Professionals) in October. With this lineup of activities for the remainder of the year, we aim to elevate awareness of HAE among medical professionals to new heights.
