Woman With Rare Disease Has Lived In ICU For 11 Years

Story By: John FengSub-Editor:  Joseph Golder, Agency: Asia Wire Report  

This woman’s rare illness has weakened her muscles and forced her to live inside a hospital’s intensive care unit for over a decade because the very expensive drug she needs is not covered by the Chinese healthcare system.

Zheng Yuning, 31, was first hospitalised with respiratory failure in February 2009, and she has been living inside Qingyuan Hospital of Traditional Chinese Medicine, in South China’s Guangdong Province, ever since.

Picture Credit: AsiaWire

Two years after she was first admitted to the ICU and put on assisted ventilation, she became the first patient in her city – and her province – to be diagnosed with Pompe disease.

The condition is formally known as ‘Glycogen storage disease type II’, a disorder which damages muscle and nerve cells throughout the body.

Progressive muscle weakness – or myopathy – is caused by an accumulation of glycogen resulting from deficiency of the lysosomal enzyme known as acid alpha-glucosidase.

Apart from being permanently hooked up to a breathing machine, the worst parts of Yuning’s condition had been kept at bay by occasional injections of the enzyme replacement drug alglucosidase alfa – also known as Myozyme. This drug is not covered by the Chinese healthcare system.

Picture Credit: AsiaWire

Developed in the United States by a company now known as Sanofi Genzyme and backed by the US Food and Drug Administration, it is the only approved prescription drug for the condition, and one of the costliest treatments in the world as a result.

As the drug had only become available in 2007 and was not to enter the Chinese market for another decade, Yuning’s parents had to purchase it via Hong Kong at the astronomical cost of 80,000 RMB (8,870 GBP) per treatment in 2012.

Her treatment was made possible by a government-backed fundraising campaign which reportedly raised 600,000 RMB (66,525 GBP), and which led to marked improvements in her condition until funding ran out.

Picture Credit: AsiaWire

Chinese food and drug authorities approved the medication in April 2017, with Yuning’s father Zheng Yang and mother Wen Meiguang still charged 600,000 RMB (66,525 GBP) for her treatment which lasted 12 months from late-2018.

According to reports, the price of therapy increases depending on each Pompe disease patient’s weight and therefore on how much of the precious treatment is required each time.

Yuning’s mum, Wen Meiguang, when contacted by Asia Wire, said that her daughter had “not been well recently”.

Yuning said: “My muscles weaken year after year, so these 11 years I’ve been kept alive with the help of a respiratory machine.

“I can’t cough out phlegm, so each day I spend all my energy clearing my throat.”

Mr Zheng said: “My daughter has been living in the ICU at Qingyuan Hospital of Traditional Chinese Medicine for 11 years now.

“Up until now, she remains Qingyuan City’s only Pompe disease patient.

“Although there is a prescription drug for the disease, the costs are far too exorbitant.

“She stopped taking the medication in November last year, and her condition has worsened since then.”

Due to her family’s inability to afford regular injections of the drug Yuning’s physical condition has deteriorated.

Muscle degeneration has reduced her spine to a curve in the shape of an S, while she lacks the strength to perform basic tasks such as clearing her throat, which she now does with the assistance of her parents up to five times a day.

Hospital experts have advised Yuning to spend more time in the sun, but her father has had to build his own contraption to reflect natural light into her room.

Mr Zheng, a businessman whose wife is a local bank manager, told local media: “Her condition has worsened recently, so she can’t go out in a wheelchair to get some sun.

“In October, I made a reflective mirror to shine some sun into her room.

“Even if it’s only for an hour a day, it’s still better than nothing.”

Mr Zheng adjusts his contraption every five minutes as the position of the sun shifts.

According to the hospital, Yuning could one day breathe without assistance and may even return to normal life if she is able to consistently receive her enzyme treatment for over a year.

But her costly therapy can only be sustained if treatment of Pompe disease is brought under China’s public health insurance programme.

Last year, reports said there were currently just over 100 people living with Pompe disease in mainland China, where the disorder is not covered by the national health service due to its rarity and the high costs of the only approved drug available.

However, the inclusion of Pompe disease under the country’s state medical insurance has been debated at a provincial level since June 2019.

Mr Zheng said: “She’s battled the disease for more than a decade.

“She cannot die before the drug is approved under our national medical insurance.”

In the meantime, any continued use of the drug Myozyme would have to be funded by the public via donations through her personal Alipay account: Zheng Yuning – sgwmg355322@sohu.com

Contributions can also be made to her personal account at the Agricultural Bank of China:

Account holder: Zheng Yuning
Account number: 6228 4811 4244 3091 110
Bank: Agricultural Bank of China
Branch: Qingyuan Fuqian sub-branch
Branch address: No 73 Lianjiang Rd, Qingyuan, Guangdong, China
CNAPS: 103601068483
SWIFT: ABOCCNBJXXX

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John Feng

I am a senior journalist and editor, and have worked for a number of different news agencies over the last decade. I am currently editor-in-chief of the Asia Wire Report news wire.

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