Lei Xiangping

    lagon235@163.com

    ON Dec. 3, Liang Binghui, a 2-year-old boy from Huizhou City, Guangdong Province, was diagnosed with Hemophagocytic Syndromea, a life-threatening rare disease caused by uncontrolled proliferation of activated lymphocyte. He needs the right marrow to replace his own, but the medical cost is egregiously high, 800,000 yuan (US$129,000), most of which is not covered by insurance. Worse still, his concern is more than money, because even if he had the money, effective drugs and therapies are not easily available.

    Liang is not an isolated case. China roughly has 16 million patients suffering from about 6,000 rare diseases, mostly related to genetic disorders. Patients with these diseases are facing similar adversities: no compulsory insurance coverage, hospitals that lack the means to diagnose and treat such diseases and the fact that over 90 percent of drugs have to be imported, which are prohibitively expensive.

    As China has become the second-largest economy, providing citizens with affordable medical care and social empathy is not only within our capacity but is imperative. Obviously, all of society should join hands to help one another fight diseases.

    Experts say the biggest contributor to China’s medical woes is a lack of effective legislative to help patients. According to WHO, a rare disease, also known as an orphan disease, is any disease that affects 0.065 to 0.1 percent of the total population; however, China has not defined what qualifies as a rare disease, let alone put measures into place to fight them. Western countries have laws in place to stipulate that rare diseases should be covered both by compulsory insurance and commercial insurance and that the government should provide preferential policies to develop drugs targeted at orphan diseases. In 1983, the United States passed the Act of Orphan Medicine, which prohibits any insurance company from declining clients with orphan diseases and gives drug companies preferential advantages such as tax breaks and research subsidies to develop new drugs. These policies make orphan drugs generally affordable.

    China is lagging behind in legislation related to treating orphan diseases. As a result, patients like Liang have to pay a lot of money or are denied effective treatments. In addition, the national basic drug list, which includes 307 drugs, only includes three drugs for orphan diseases; and out of the 130 orphan drugs available on Chinese market, only 57 drugs can be minimally covered by the government’s insurance program. Patients suffering Gaucher, a genetic disease in which fatty substances accumulate in certain organs, have to pay 2 million yuan all by themselves to use Cerezyme, the drug for the disease.

    Years ago, the Chinese Government issued administrative rules to encourage the production of orphan drugs. Recently, a few local governments have come up with rules to have a certain number of rare diseases covered by social insurance. But some lawmakers say these are not enough because China really needs an orphan-disease-tailored law and enforceable policies.

    Besides legislation, drug companies, nongovernmental organizations and ordinary people can also help fight rare diseases. WuXi AppTec, a Chinese pharmaceutical company, launched the first free online diagnosing platform to help patients find therapy targets with its sophisticated gene testing technology. Some domestic drug companies are preparing to develop orphan drugs by cooperating with multinationals, and more NGOs have been established to seek donations and offer help.

    It is time China took up the fight against rare diseases. These patients are part of our society and deserve better care.

    (The author is an editor with the News Desk at China Radio International.)