A woman’s rare illness has weakened her muscles and forced her to live inside a hospital’s intensive care unit (ICU) for more than 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 China’s Guangdong Province ever since.

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.

Woman With Rare Disease Has Lived In The ICU For 11 Years

The condition is formally known as Glycogen storage disease type II, a disorder that 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.

As well as being permanently hooked up to a breathing machine, the worst parts of Yuning’s condition have 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.

Woman With Rare Disease Has Lived In The ICU For 11 Years

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 as a result is one of the most expensive treatments in the world.

As the drug had only become available in 2007 and did not 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) per treatment in 2012.

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

Woman With Rare Disease Has Lived In The ICU For 11 Years

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) for her treatment, which began in late 2018 and lasted 12 months.

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

Yuning’s mum said 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.

Woman With Rare Disease Has Lived In The ICU For 11 Years

Her father, Yang, 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.

Woman With Rare Disease Has Lived In The ICU For 11 Years

Muscle degeneration has reduced her spine to an S-shaped curve, 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.

Yang 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.

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

Woman With Rare Disease Has Lived In The ICU For 11 Years

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 more than 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.

Woman With Rare Disease Has Lived In The ICU For 11 Years

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

Yang added:

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.

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