This article is taken from an extensive feature on the 2023 HAEi Regional Conference APAC, published in Global Perspectives #1 2023
The Patient and Caregiver Track consisted of four main topics. Fiona Wardman, HAEi’s Chief Regional Patient Advocate, opened the Patient and Caregiver Track with some interesting statistics:
- Five out of the top ten most populous countries in the world are in the region, and they are: China (1.41 billion), India (1.39 billion), Indonesia (276 million), Pakistan (225 million), and Bangladesh (166 million).
- The region has another four countries that are in the world’s top 20 when it comes to population: Japan (125 million), the Philippines (111 million), Vietnam (98 million), and Thailand 69 million).
If one uses the most widely cited statistic regarding HAE prevalence – 1 in 50,000 people – there could be more than 400,000 people with HAE in the Asia Pacific region.
Consistent with the conference theme of Take Action, Fiona quoted the physicist, chemist, and two-time Nobel Prize laureate Marie Curie who said,
“Life is not easy for any of us. But what of that? We must have perseverance and, above all, confidence in ourselves. We must believe that we are gifted with something and that this thing must be attained.”
Click on a topic to know much more about what went on during the sessions:
Panel Members then provided an overview of what is going on in their countries.
Australia & New Zealand, Olivia Worthington
We urge HAE patients to be more involved in advocating for new treatments to be funded and available. We need patient voices and lived experiences to be heard by the funding bodies. We absolutely cannot be complacent when it comes to having treatments. We must continue to work together to ensure that future generations can access the newest therapies. Also, we are working to ensure that every patient knows that there are new options – and that it is important to take part in trials because, without trials, there are no new treatments.
Hong Kong, Sandy Chan
Unfortunately, there is a taboo in Chinese culture toward family screening. However, we have built a very strong patient community, obtained our doctors’ support, and achieved registration of the first acute attack medicine in 2022. We hope HAE patients will hold each other together while we wait for new medicines and that the price of medicines will get much lower very soon.
India, Shaibal Guha
Uniting HAE patients into a strong group is still the biggest challenge. We don’t have a system of a national registry of patients or a system of referral from general practitioners to specialists, so it’s very difficult to trace the patients. When we started in the pre-WhatsApp era, we added patients one by one into the group, and we now have about 200+ patients in the WhatsApp group called ‘HAE Bravehearts’. It’s a very cohesive group: Every day, you’ll find members sharing their sorrows and joys, and every other person is always eager to help others. However, much work needs to be done. When you consider the country’s population, there must be about 20,000 to 30,000 patients, so 200+ is just the tip of the iceberg.
Indonesia, Rudy Purwono
No doubt there is strength in numbers, so we work on creating more contacts and raising our voices together. We are learning from what others are doing to ensure no undiagnosed or misdiagnosed patients. Hopefully, we will gather more members and have many hospitals and doctors aware of HAE.
Japan, Professor Beverly Yamamoto
Setting incremental goals and taking a gradual approach to building a patient organization is important. Consistently focusing on incremental goals, in the aggregate, can result in drastic changes. Growing HAE Japan into a strong organization we have over a relatively short period significantly improved the HAE treatment environment. We are almost on par with some leaders, like the US and the European countries, regarding the number and quality of HAE treatments available. In this context, gathering data is very important when talking to the authorities. Data is almighty if it is the right data.
Pakistan, Shakeel Afridi
HAE Pakistan is working on establishing an HAE care center and a range of HAE-knowledgeable hospitals all over the country. We also want to be able to offer gene therapy testing for each patient who wants to test their children and family. In the meantime, using the HAE Emergency Card is essential, as it will help you in urgent situations.
The Philippines, Krizzia Lavone Ramos Alferez
While we are still working on establishing an official HAE group, some concerned people have communicated with us through our website. We have been able to get information about the disease to them, and we have encouraged anyone else who has experienced similar symptoms to HAE to see a specialist and get tested. There are tests available in the country for the diagnosis of HAE. In the Philippines, plasma transfusion is the only treatment for acute and major attacks, while danazol tablets are used for prophylaxis. Unfortunately, danazol is no longer available, so we must buy it from another country.
Singapore, Lim Tong Hao
Whether you have had HAE for years or have recently been diagnosed, you should share your experiences. Sharing your story can raise awareness and inspire others going through a similar journey. Together we can tackle our challenges and build a community of support and understanding. Once you have a strong patient group, it is far easier to get things done. With the help of the Rare Disease Society of Singapore, we have shared a patient story on national TV. In addition, we have teamed up with doctors to share a survey with their patients and family members so we can get to know them better and find out what challenges they are facing. Our goal is to work together to come up with solutions that will be helpful to everyone.
Taiwan, Hsin-Fang ’Frank’ Tseng
Thankfully, more and more people and doctors know about HAE. However, the number of confirmed HAE families in Taiwan is much smaller than in other regions, so there must be many people who have yet to be diagnosed. Remember to pay more attention to whether people around you have similar symptoms, as your kindness can save a patient or a family.
Thailand, Suchitta Kengyanyagarn
Patients and caregivers should join HAE Thailand as givers because we are not burdened. We are strong; we are fighters; we are special. All the pain we have been through – someone lost a dream, someone lost their job, someone lost the people they loved the most. This is an excellent opportunity: We have us, we have our medical people, we have HAE partners, and we have HAEi. Together we are stronger. We can stop the pain and give a better future for our children.
Asked about their number one priority for future HAE work, the panelists mentioned:
- Bringing those patients forward who hide their faces (Pakistan),
- Finding more patients and gathering data (Singapore),
- Getting funding (Hong Kong),
- Having access to medication (Indonesia),
- Identifying the remaining patients (Japan),
- Increasing awareness among doctors as that will increase the number of patients (India and Taiwan),
- Making sure that all patients have access to treatment (the Philippines and Thailand), and
- supporting patients (Australia & New Zealand).
Participants then watched videos recorded by HAEi friends from recordings by Representatives from Afghanistan, Bangladesh, China, and South Korea.
Afghanistan
Please support us because we don’t have any treatment facilities, and HAE patients are struggling. We must travel to neighboring countries for HAE tests, and that is expensive. Also, visa facilities are currently unavailable in Afghanistan, so please support and help us.
Bangladesh
We don’t have facilities like diagnosis and medications, so our message to doctors, patients, and healthcare professionals in Bangladesh is this: please come forward and raise your hand to help people with HAE.
China
HAE emergency drugs and preventive drugs have been introduced to China in a short period. Now the drugs are covered by national medical insurance, and the quality of life of Chinese patients will be significantly improved. We originally had only one HAE specialist in Beijing. Still, we have doctors working on HAE in major cities nationwide, making it more convenient for us to get medical treatment and confirm the diagnosis. In addition, we hope to have more opportunities to communicate with patient groups from different countries. This way, we aim to have more experience in HAE medication and knowledge of mental health, and we also hope to travel abroad and get help from HAE doctors overseas.
South Korea
HAE Korea has a short history but has been registered as a nonprofit foundation. In addition, the treatment environment for patients with severe symptoms has been improved by raising the prescription of icatibant from one to two at a time. We will continue to try to improve patients’ treatment and psychological environments. We are delivering our voices to government agencies with the help of many people so we can get insurance benefits for the long-term preventive medicine we want. To do that, more patients must join us to raise our voices.
Fiona closed the session by reemphasizing the conference theme and challenging the audience to ‘Take Action’ and make things happen in their countries.
Henrik Balle Boysen, HEAi’s Executive Vice President and Chief Operating Officer, and Anthony J. Castaldo, HAEi’s President and Chief Executive Officer, took the stage to provide an overview of the numerous free resources HAEi offers its Member Organizations. Due to space limitations, we refer readers to our website, haei.org, for detailed descriptions of HAEI’s incredibly useful programs and services that include:
HAE Companion – provides users with an easy way to store HAEi-designed emergency cards available in 84 countries. In addition, users can access contact information and directions to the closest ACARE Center, knowledgeable HAE physician, or hospital. The app is available on both Apple’s App Store and Google Play.
>> Read more about HAE Companion
HAE TrackR – available in 35 languages (with Thai recently added), this advanced app makes it easy for patients to keep a record of their attacks, treatments, and prophylactic treatments, and it allows the patients to set reminders for their prophylactic treatments. The app is available on both Apple’s App Store and Google Play.
HAEi Connect – a regulatory-compliant, sophisticated, yet user-friendly patient membership database platform that puts highly relevant information at the fingertips of Member Organizations. HAEi Connect eliminates the need for confusing and easy-to-misplace paper files and Excel spreadsheets. The platform provides a simple online process for new members to join and enables thorough and granular analysis of membership demographics through an easy-to-use graphical interface. It also allows timely delivery of newsletters, surveys, and general correspondence. HAEi Connect fully complies with EU-GDPR data protection.
>> Read more about HAEi Connect
HAEi Advocacy Academy – an online, cloud-based virtual training platform featuring comprehensive educational modules on disease-related information and grassroots advocacy skills. The HAEi Advocacy Academy is available to anyone who wants to sharpen their advocacy proficiency.
Emergency Room Posters and the Understanding HAE Guide were also mentioned as great tools to raise awareness of HAE.
All technology platforms, resources, and services provided by HAEi are carefully designed to fit the unique needs of our global community.
Fiona Wardman and Rachel Annals were the next speakers and delivered a great talk on ‘Raising HAE Awareness in APAC’.
Fiona and Rachel encouraged the audience to use social media to share their stories, make connections, and establish collaborative relationships. They pointed to the power of distributing flyers and posters, writing articles for the HAEi magazine Global Perspectives, attending meetings, and taking part in the annual hae day :-) awareness activities, and completing HAEi Advocacy Academy courses.
Rachel reminded the audience that “Knowledge is Power”. Contact your government officials and keep them up to date. Keep reminding them that you are there and need them to make decisions for the benefit of people with HAE.”
Fiona added, “Persistence will get you there, while consistency will keep you there. Remember to speak to the media – and use your youngsters to spread the word via the social media channels as they are often far better at it.”
Tony and Fiona then took the stage to discuss, ‘The Path to Success in APAC – Take Action!’ They described the study methodologies that HAEi offers to its member organizations. These studies are designed to provide scientifically collected data that will give people with HAE a “seat at the table” when government officials consider granting access to and reimbursement for HAE medicines and include HAEi’s
- Heat Map Survey,
- Baseline Burden of Illness Study, and
- Pharmacoeconomic, Socioeconomic, and Quality of Life Assessment.
While individual stories are vital, government officials responsible for making healthcare budget decisions demand data to support access and reimbursement for HAE medicines.
The Heat Map Survey identifies clusters of people with chronic swelling in countries where few, if any, are diagnosed with HAE. HAEi’s Baseline Burden of Illness Survey provides valuable data regarding the number and types of attacks people are experiencing, emergency room and hospital visits, impact on work, school, and family life, and overall quality of life. The Pharmacoeconomic, Socioeconomic, and Quality of Life Assessment targets countries that already reimburse HAE medications and is designed to measure the positive economic, social, and quality of life improvements that result from access to modern therapies.
Find more feature articles from the 2023 HAEi Regional Conference APAC:
