Until eight years ago China had no policy on the care of people with rare diseases. There were discussions about it . Then not only was rare defined but a list of a hundred and twenty one rare diseases to be supported was published which included aHUS. It had met the Chinese set criteria for rare of less than 1 in 10,000 of the population or fewer than 140,000 patients affected.
In 2020 Global Action featured an article about it – to be rare in 1.4 billion people. We saw it as a glimmer of hope for aHUS patients
Global Action estimated there could be 2000 to 3000 aHUS patients in China. That would be the same level as the USA which had a fifth of China’s population.
Though little was known about the aHUS patients in China. There may have been articles written about them in the Chinese language in national journals.
Global Action had found and featured an article by Huimai Chen et al published in 2016 which reported on the genetic results of an adult aHUS cohort. The researchers also compared their results with other nations. The article can be read HERE.
In recent years that has changed with article about aHUS in China being included in Western databases like Pubmed. These are aHUS about triggers, treatment, and genetic and other characteristics of patient. Frequently about aHUS children.
Among the first which was about children, reported on 66 children diagnosed with aHUS in the Beijing Hospital between 2011 and 2017. The Jiahui Chen Group reported on the characteristics of the children and they found that two thirds of them had tested positive for Anti factor H antibodies. The other third had none but no other genetic results are given. The AfHa patients were older around 8 years of age compared to around 3 years old for the non AfHa group.
As this predates eculizumab access in China treatment was by plasma exchange and immunosuppression to get rid of the antibodies. Outcomes were generally favourable but there was disease “progression” in some cases.
So by 2020 something was being known about Chinese but was it representative and was it adding to the science needed to distinguish TMAs and their treatment in the new “aHUS” nomenclature ? The boom in published research about aHUS in China will be explored in the next article.
Article No 781
