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.

Source: “Unilad”

New in health

Conclusion with the winter Blues

Light therapy: As a day light lamp winter depression counteract

star travel worlds

Western Europe cruise from Hamburg with All Inclusive ab 499 Euro

Winter cover in the Test

Stiftung Warentest checks bed cover: Must be expensive?

Science explains quickly

Why Crystal Meth turns people into Zombies

Korean Cosmetics

Beauty secrets from the far East: layer-by-layer to beautiful skin

ARD-documentary about organ donation

"Total frustrierend": So Doctors experience the organ shortage in Germany’s hospitals

Work Sitting or Standing

Ergonomics in the workplace: to prevent physical discomfort

Pamela Mature

"Many women struggle for an hour on the Stepper, the total uneffektiv&#034 is;


The first case of death by a mysterious new respiratory disease in China

Sports – but do it right

"Coming away from the Waage": Here, fitness trainers reveal their best motivational tips

"Candida auris" in the United States

Three patients affected: Dangerous yeast mutated in the process of treatment

"Animal Hoarding"

Phenomenon of animal-Messies – why do people collect sick cats, dogs and birds

"Brain function betroffen"

Justin Bieber has Lyme disease – this is what makes the disease so insidious

Highly Contagious Disease

WHO sounds the Alarm: More than 6,000 Deaths due to measles in Congo

Inflammation of the brain

Borna Virus: More deadly infections in Germany than previously thought

Load for waters

Off to the bathroom? Please don’t! So you dispose of drugs, without harm to the environment

Infection by Snack

Popcorn between the teeth family the father brings life in danger – heart SURGERY saves him

Skin blemishes

What helps against pimples? With these tips, you can improve the appearance of your skin

Stiftung Warentest

Fast and easy slimming pills, diet – does it work?

Report of the IQWiG

PSA Test to prostate cancer: experts warn of serious damage

New year’s resolutions

Keto diet: Why Low-Carb is popular, but not sustainable for environment and health