Embracing Opportunities for Hereditary Angioedema in APAC … and beyond

Professor Philip Li encapsulated the spirit of the 2025 HAEi Regional Conference APAC in a single sentence: “We don’t only care for our own.” He told his audience that even if it feels impossible, perhaps you are a small clinic or just one patient, you’re never alone. People sitting next to each other right now will be allies today, tomorrow, and for many years to come. This, he said, is the HAE global identity. We care for the entire world’s patients. Those that are doing great must help other countries too.

Before he got to his rallying cry for people to work together, Professor Li highlighted four key areas of activity across the region.

“There are four As: Awareness, Access, Advocacy, and Alliance.”

Asia is a very big and very diverse part of the world, Professor Li said, but there is a common belief that HAE is rare in the East, which he found frustrating. HAE is not rare in the region; it’s just rarely diagnosed. Referencing a review article that included many colleagues from the conference Scientific Committee, he said there aren’t enough specialists, knowledge, advocacy, testing, and medication.

A large part of this is a lack of awareness, he said. Looking at regions like Mainland China and Taiwan, despite lots of genetic similarities, there is a big difference in the epidemiology and how many patients are diagnosed. It’s not, he said, because it’s more common in one region; it’s because the infrastructure and the facilities are different.

How can we improve things? Professor Li told the audience that all the statistics show that countries with patient support groups and guidelines do much better in getting access to therapies.

Professor Li showcased a familiar picture of a patient who was misdiagnosed for many years due to a lack of basic knowledge of HAE. However, advances in HAE in Hong Kong meant the patient was finally able to get the right testing to get a diagnosis. This, he said, was evidence that we know patients are missed, but there is also a chance to embrace opportunity.

Reflecting on the situation in Hong Kong, Professor Li said that as recently as 2018-2019, there were almost no HAE patients, and doctors had no idea what it was. There was no HAE registry, no tests, and no drugs. Patients had nowhere to go. “We’ve managed to come a long way since then,” Professor Li remarked.

One way to embrace opportunities is through education. Professor Li told the patients in the audience that they were more knowledgeable than many doctors in the region. “Work together with interested doctors and educate,” he encouraged them.

Returning to Hong Kong, Professor Li recalled their awareness-raising activities (the first A): “We wrote about HAE in a handbook of medicines for doctors. We wrote about it in local magazines. We taught it in medical school. We went on TV. Patients told their stories. We shared online videos. Whatever it took to teach people and doctors. Our efforts paid off.”

That success was evidenced by the referral pathways, where doctors came forward with an HAE diagnosis in mind. All of this, he told the audience, is down to a partnership between doctors and patients.

As awareness and diagnosis began to ramp up, family screening became a reality in Hong Kong. However, according to Professor Li, there was fear despite the evidence that a diagnosis improves outcomes tremendously. For some people, the fear was due to the needles used to take blood for testing. A new method, called ‘dry blood spot’ testing, removes this obstacle. Now, Professor Li explains, nurses in Hong Kong take taxis to potential HAE patients and get enough blood from a simple pin prick to make a diagnosis.

Expanding on testing, Professor Li reminded people that his second A, access, is not just about medication. Partnering with his colleagues in India has created more opportunities for testing in Asia and has led to clever new options for diagnosing HAE type-2, a rarer form of the disease.

The prevalence in Hong Kong, Professor Li says proudly, is now comparable with the Western world. “You have exactly the same proportion of HAE patients. You just haven’t found them yet,” he told the audience.

Clinical trials also provide a fantastic opportunity to help individual patients and the wider community, Professor Li stressed. “Undertaking clinical trials means patients are the first to try potentially wonderful medication, and we have evidence that they work just as well in Asian populations.”

Professor Li then posed a question: “Are our patient support groups really important?” Answering this, he said that there is scientific evidence that advocacy and having a patient support group and a global network through HAEi improves things. His own research, he said, demonstrated that the establishment of a patient support group leads to more patients diagnosed and greater access to medication.

“If we have a patient support group, we have an identity. We unite our voices. Slowly but surely, you can get treatment.”

As further proof that action leads to positive outcomes, Professor Li indicated that in Hong Kong, there are now prophylactic and on-demand treatments for all of their patients. This is a complete change from 5 or 6 years ago when there were no medications.

Returning to the theme of alliance and working together to embrace opportunities, Professor Li highlighted that by joining apps and sharing data, people are part of something bigger.

“HAE is not just your family. It’s not just your country. It’s across the world.”

Summing up, Professor Li told the audience that education is vital to raise awareness; working across different countries and understanding nuances and barriers can lead to access; stronger patient groups will improve advocacy efforts; and developing regional and international alliances will bring it all together.

“Tell us, and we’ll think of a solution together,” he concluded.