Moving Epilepsy Treatment in China into the Modern Era

The following is excerpted from a report by Shichuo Li, Wenzhi Wang, Jianzhong Wu and Hongchao Yang.

Epilepsy has been recognized in Chinese medical texts for at least 2,200 years, and over the centuries it has been treated with a variety of traditional Chinese medical practices including herbal preparations, acupuncture and moxibustion among many folk therapies. It is questionable how effective treatments were, and better results started to appear in the 1950s with the introduction of modern medicines and surgery. However, there wasn’t much information on the impact of epilepsy on public health. In addition there wasn’t much priority given epilepsy in the national health agenda with only a few healthcare workers who had a focus on epilepsy.

The epilepsy movement got a major boost in 1983 when Chinese epileptologists and other interested healthcare workers held the first National Epilepsy Congress in Yichang on the Yangzi Riven in central China. These Congresses have been held every two years since. To start building international professional ties, three addtional Congresses were held under the name of World Association of Chinese Epileptologists, in turn, in Taipei, Hong Kong and Guangzhou. Although this organization never achieved official recognition, the meetings fostered broader ties for the national group. In the 1990s local epilepsy groups were organized under the umbrella of local medical associations, but the formation of the national organization didn’t begin until 2002 when Dr Shichuo Li started to organize interested neurologists, neurosurgeons and other interested professionals into the China Association Against Epilepsy (CAAE) which was approved by the Ministry of Health of China in 2004. At the official inauguration in the Great Hall of the People in Beijing leaders from the IBE, ILAE and WHO joined national leaders and almost 1000 epilepsy health workers in celebrating the event. This celebration was followed in short order by the CAAE joining the ILAE as an official Chapter.

Even before the official formation and approval of the CAAE, Chinese epileptologists were busy working with international colleagues on improving epilepsy care across China. Perhaps the greatest challenge facing these efforts was a lack of knowledge about the number of people who were affected by epilepsy. The Global Campaign Against Epilepsy (GCAE), under the auspices of WHO and the Ministry of Health, began a four-year demonstration project in 2000 under the title of Epilepsy Management at the Primary Health Level in rural areas of six provinces. There were four components to the project: two epidemiological surveys, a phenobarbital treatment intervention trial, and the creation of an educational program. The overall goals were to improve the identification of people with convulsive forms of epilepsy within the existing local health care system and to develop a model of epilepsy treatment at the primary care level that could be applied nationally. In the course of the project it was hoped that an accurate determination of the prevalence of active convulsive epilepsy could be obtained as well as an estimate of the number of people with convulsive epilepsy who were not being treated (the treatment gap). 

This collaborative project had a number of  important results.  The survey in the project areas found the prevalence of active convulsive epilepsy was 4.6/1000 and the adjusted mortality rate for people with epilepsy was almost four times that of the general population. The study enrolled over 2,400 patients with convulsive epilepsy into a trial of phenobarbital therapy. Two-thirds of the patients who completed 12 months of treatment had a better than 50% reduction in seizure frequency and one-third were seizure-free. At two years almost 75% of the patients had a reduction in seizures of at least 50% and a quarter remained seizure free. Only 1% of the patients stopped the phenobarbital because of side effects. The availability of treatment reduced the numbers of patients not taking medications (the treatment gap) significantly. Also of great importance, the cost of providing medical care to these patients once they were on phenobarbital was reduced to less than 20% of what it had been before phenobarbital. The results of this project were so convincing that the Ministryof Health has expanded the project so that more than 39,000 patients are receiving treatment, and a model is being developed for the treatment of epilepsy in rural areas where there are no neurologists. 

This project has clearly demonstrated the public health and economic benefits of treating epilepsy, and the data that were generated played a major role in convincing the national authorities to support better access to treatment for patients with epilepsy. The results of the project also demonstrate the benefits of the drive and hard work of local epilepsy specialists who wish to improve epilepsy care.