Drugs too expensive: woman with rare disease lives for eleven years on the intensive care unit
The world knows Zheng Yuning, consists of hospital beds, protective suits, Respirators, and the view from the window. Since eleven years of age, the Chinese woman lives in the ICU of a hospital in the province of Guangdong, according to the Portal “Unilad” and that they will ever be released, is very unlikely. Yuning suffers from Pompe disease, an extremely rare hereditary metabolic disease that leads to muscle weakness and, in many cases, eventually death due to respiratory failure.
Around the clock, they must be monitored by a physician, and her constant companion, a breathing machine, without which it could not survive. “My muscles are from year to year is weaker, so for me in the past few years, this machine has held,” says the 31-Year-old.
Medical treatment is extremely expensive
For a number of years a drug for their disease is available – but this is extremely expensive and is not paid by the Chinese health insurance. To ensure the provision of medical care, the family of Zheng Yuning to their financial limits.
The drug Myozyme, which has been developed by a pharmaceutical company in the United States, with the support of the government, is among the most expensive in the world. In China, it is only since 2017 is available, so that Yunings parents had to order the drug for a long time in Hong Kong. Treatment cost the equivalent of more than 10,000 euros, reported: “Unilad”. Have covered the costs through a Crowdfunding campaign on the family, which was also supported by the Chinese government. Nevertheless, a consistent supply at these prices, was not possible. And even now, where the drug is on the Chinese market, is beyond the financial possibilities of the family.
Life in intensive care – a battle against time
Here, Zheng Yuning could breathe, according to the attending Doctors, even independently, if they could get the drug for more than a year. Instead, her condition deteriorated more and more – now in your case, the throat and Swallowing difficult, reported to your mother. As his daughter, more solar was recommended light, has made her father a mirror in her hospital room. This reflects the sun’s rays in the direction of the hospital bed, every five minutes, the father changed the Position and adjusts the position of the sun.
Since last year, Zheng Yunings family has new hope: for the First time, have been considered to subsidize the required medicine from the state financially. However, as in the whole of China is only just over a hundred people are affected by the disease, it may take some time before this proposal passes in fact to the implementation. Time, the Zheng Yuning perhaps, has not. “She is fighting now for more than a decade against this disease. You must not die before the drug is included in the health insurance,” says her father.
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