Rare diseases patients to receive charity benefits
- By Jiao Meng
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E-mail China.org.cn, May 8, 2012
The Ministry of Civil Affairs will include rare disease as part of serious illnesses that will begin qualifying for benefits from China's charity aid system starting this year, Beijing News reported.
Calculated based on disease incidence defined by World Health Organization（WHO） and patients in other countries, it is estimated that there are over 10 million rare disease patients in China, Beijing News reported.
Zhang Xianhui, an official at the rare disease charity office of China Charity Federation said rare diseases have been neglected by health agencies, pharmaceutical firms and the community for a long time, due to significant low morbidity. At present, China still has no official definition or accurate information on the number of people who are afflicted.
The WHO estimates that there are between 5,000 to 6,000 known rare diseases afflicting 0.65 to 1 percent of the world's population. Based on that, over 10 million Chinese could be suffering from rare diseases.
Dr. Han Bing of Peking Union Medical College Hospital said he believed the first step for rare disease patients to get help was to establish a self-help online community, where doctors could be invited to directly communicate with people needing their assistance.
Liu Guolin, secretary-general of China Charity Federation, explained difficulties the organization were faced with included the fact that many local medical institutions did not have necessary testing equipment or staff to diagnose and treat rare diseases. As a result, many patients missed the chance of best possible treatment – some even suffered further injuries – due to misdiagnosis or improper treatment. To make things worse, their medical costs were not covered by social welfare programs.
The inclusion of these diseases in the country's charity aid system could hopefully change that. The rare diseases are also referred to as orphan diseases, due to the extreme small number of patients giving little financial incentive for private pharmaceutical companies to develop new medications for treatment or prevention.
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