By Fiona Wardman, HAEi Executive Committee member and President of HAE Australasia
China has a population of approximately 1.4 billion, which means there are potentially 28,000 patients with HAE in this huge country. Based on these numbers there is only a small percentage of patients already diagnosed and being treated by knowledgeable physicians.
At this stage, Chinese HAE patients currently only have access to androgens and tranexamic acid for prophylaxis, and fresh frozen plasma for emergencies, and with such a high number of patients and no access to modern treatments there are unnecessary procedures and sadly deaths.
As in other countries, China also suffers from the lack of awareness within the community and within the medical profession, and therefore HAE is misdiagnosed and under-diagnosed as is so common (still) around the world.
With all of this in mind, there is some good news. China has some dedicated physicians who are extremely passionate and knowledgeable, and there are a handful of committed patients willing to become a united voice and work in the HAE China organization. After the 12th Annual ICORD Conference and 6th China Rare Disease Summit in Beijing last year there has also been an undertaking by the government to recognize rare diseases and make treatments a priority. Hopefully, these changes will be made sooner rather than later.
Over the past few months, HAEi and CORD (Chinese Organisation for Rare Diseases) have been working together to host an HAE China Workshop, which was held on 11 March 2018 in Beijing. The workshop was attended by 100 patients and carers from within Beijing and from other cities within China, Chinese physicians, international speakers, CORD, pharmaceutical company representatives as well as representatives from HAEi.
We all gathered in the Grand Ballroom at the DoubleTree by Hilton in Beijing for an early start. The day was packed full of speakers with lots of valuable information, which included:
- ‘What every patient needs to know about HAE’ by Dr. Henry Li (USA),
- ‘Current situation of HAE in China’ by Dr. Yuxiang Zhi (China),
- ‘Current situation and the chance of Chinese rare disease organization in China’ by Kevin Huang (CORD),
- ‘History of HAE treatments and what is on the horizon’ by Prof Konrad Bork (Germany),
- ‘Development of HAE treatment in China’ by Dr. Yingyang Xu (China),
- ‘The foundation and history of HAEi’ by Executive Director Henrik Balle Boysen (HAEi),
- ‘Disease Burden of Hereditary Angioedema patients in China’ by Dr. Shuang Liu (China)
We also heard from three Chinese patients: Ms. Nan Zhang spoke about ‘The History of HAE in China, and the thinking on the development of HAE in China’, and two other patients spoke about their horri c experiences with laryngeal attacks and losing family members because of HAE.
There was also a panel discussion on starting a patient organization, and a physician Q & A. There was good involvement by the patients and carers in the panel discussions with plenty of questions asked about starting an organization, how to get involved, and medical type questions on HAE.
After the workshop, many of the patients and carers stayed behind and networked with each other.
Access to some social media in China is not allowed. However, they already established a great patient network via a WeChat group. Here patients and carers can discuss issues and support each other. Dr. Zhi who makes herself available to all patients across China monitors this group – she is a true superstar.
The workshop was a great success, and HAEi would like to thank everyone who attended and helped organize the event. Also, thank you to everyone who attended the dinner that HAEi hosted on the night before the workshop so everyone could come together and meet each other beforehand.
We wish the patients, carers, and physicians in China the best of luck with changing the landscape for HAE patients in their country, we know they will be successful, and HAEi will continue to support HAE China with their endeavors.