From Regional Patient Advocate Lim Yong Hao

The new year is a natural juncture for reflecting on the year that has just ended and thinking about the prospects for the year ahead. I was very fortunate to end 2023 on a high note with an invitation to speak on patient advocacy at the LeadHAE Summit in Bangkok. I reconnected with familiar faces, made new connections, got fresh insights, explored novel perspectives, and uncovered promising patient and physician leads.

Preparing for my presentation allowed me to dive deeper into what patient advocacy, particularly within the context of HAE, meant for me personally. For patients with HAE, the aspiration is for a “normal life” – characterized by well-managed symptoms and unhindered lifestyle choices. To achieve this, advocacy efforts must confront five pivotal pillars: ensuring unconstrained access to treatments, facilitating early diagnosis, mastering trigger management, mitigating social stigma, and reshaping public perceptions.

The issue of treatment access resonated deeply during these deliberations. Access to treatment extends beyond mere availability; it encompasses factors such as ease of access, affordability, and the availability of a diverse array of treatment options tailored to individual patient needs. Hong Kong (HK) has made commendable strides in this regard, offering Berinert at no cost since 2023, with icatibant to follow in April 2024. Nevertheless, the absence of modern prophylactic treatments remains conspicuous. Conversely, China and Taiwan have made notable headway, providing access to both modern on-demand and prophylactic treatments, with icatibant and lanadelumab available in both locales. Yet, in China, regional disparities in subsidies and physical availability hindered equitable access across the different provinces; in Taiwan, a highly restrictive indication for lanadelumab excludes the majority of the patients. Modern treatments are still unavailable in Singapore, Malaysia, Indonesia, and Sri Lanka, leaving patients to resort to second-line treatments like attenuated androgens and tranexamic acid. Although patients in Singapore may access Berinert in the Emergency Department and potentially obtain named access to Haegarda, lanadelumab, or icatibant, the costs are prohibitively high. Therefore, while there have been notable improvements in treatment access within the region, significant gaps remain in availability, affordability, appropriateness, and options. Supporting access to treatment remains a top priority for me in the coming year.

Dialogue with Member Organizations underscored a surprising concern: the importance of sustaining the momentum of HAE patients, particularly in regions where treatment access has improved. There is a perception that since modern treatments are now available, the advocacy job is “complete,” and the respective Member Organizations can rest on their laurels. This perception poses a threat to the continuity of advocacy efforts. There are many avenues through which advocacy can continue to effect progress, ranging from facilitating early diagnosis to fostering trigger management strategies and bolstering public awareness. HAE HK is expanding beyond patient meetings to include workshops or activities geared towards trigger management, such as stress management, to benefit patients. HAE Taiwan has kickstarted 2024 with a patient meeting to maintain momentum and aims to increase attendance from their patient community. In Singapore, I’m preparing to officially register the patient group, enabling fundraising and the organization of more engaging activities to involve patients, physicians, and the public. Additionally, we’re exploring the feasibility of establishing a physician workgroup for HAE, drawing inspiration from successful initiatives in Thailand.

In addition to supporting local initiatives, I have also been fostering connections with the global HAE community and enhancing access to helpful resources. From facilitating participation in international events such as the 2024 HAEi Global Leadership Workshop to spearheading the translation and dissemination of informative materials in local languages, these endeavors underscore our commitment to an interconnected and informed community. I facilitated previously halted efforts to have HAEi Emergency Department Posters printed and distributed. I am happy to say that these posters are currently being printed and distributed across hospitals in China. Additionally, the informative HAE guides, “Understanding HAE” and “Women with HAE,” are being translated into the languages spoken in the region. I anticipate these translated materials will be available soon, and I’m hopeful they will contribute significantly to raising awareness of HAE among people in the region.

Regional collaboration has been at the forefront of my thinking lately. Witnessing the success of recent events such as the Rare Disease Day celebration in Singapore, the 2nd Southeast Asia Rare Disease Summit in Bangkok, and the 2024 HAEi Regional Conference Americas in Panama City, I am convinced that advocacy efforts can yield greater impacts when we join forces. Inspired by these examples of effective publicity, coordinated planning, and international collaboration, I actively seek ways to foster greater cohesion and collective action within the region.

If anyone has any ideas or suggestions on how we can make this happen, please do not hesitate to contact me. I am eager to explore new avenues for collaboration, and together, we can make a real difference in the lives of those affected by HAE.

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