Chinese families 'destroyed' by burden of facing rare disease ALS

In a small flat on China’s east coast, a young woman is fighting a battle she cannot win.

She lies trapped in bed and in her own body, the only sound from the room is the rhythmic mechanical breathing of her ventilator.

At just 37, she has the rare disease amyotrophic lateral sclerosis (ALS) which slowly attacks the nervous system causing a patient to lose control of their muscles. It is a death sentence.

Her grandmother periodically wipes the discharge that dribbles from her nose, she cannot speak, eat or breathe by herself.

“I’m here everyday, day and night. Someone must be here,” she says. “It is extremely tough.”

But there is a double tragedy under this roof because in the next room lies the young woman’s mother, also unable to move, afflicted by the same condition.

She was diagnosed two years after her daughter, after she started to feel weakness in one of her arms.

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“It’s difficult to breathe, there’s not enough air, I have no strength.” she explains in a raspy, laboured voice obstructed by an air tube affixed to her nose.

“My neck can’t hold itself up, the muscles won’t do it anymore.”

But she is overcome with emotion when talking about her family, about her mother who is the key carer for both her and her daughter.

“My mother is over 80 years old and should have been enjoying her life by now,” she says, her eyes filling with tears and her voice cracking.

“It just feels my family is really on the verge of being destroyed. What can we do? There’s nothing we can do.”

The family didn’t want us to share their names, but they want the world to know just how devastating this disease can be and the extent to which they feel they’re fighting it alone.

And they’re not the only ones.

In fact, in a rare move, a former senior leader in China’s powerful tech sector has spoken up about the difficulties of facing a rare disease in China.

‘They choose to end their life’

Cai Lei used to be vice president at JD.com, which is China’s equivalent of Amazon, but he was diagnosed with ALS in 2019 and is now putting his vast expertise and personal wealth into trying to find a cure for the disease and improving the experience of sufferers in his country.

He says it can be so isolating that many patients turn to suicide.

“The emotional shock is difficult for average people to bear,” he says, “there is no hope, the individual is faced with death, and the family is faced with collapse.”

“Many don’t want to burden their families, or their families can hardly bare it, so they choose to end their life.”

Aside from the emotional impact of such a diagnosis, in China suffering a rare disease can also be financially crippling.

In the case of ALS one drug, riluzole, is covered by the national healthcare scheme – but not in all provinces – any additional medicine, home care and equipment is not.

Under China’s healthcare system usually only the most commonly needed medications and treatments are covered and even then the state doesn’t foot the entire bill, with the patient usually paying around 40% of the costs.

The family we met can’t afford private carers and have spent almost all they have on equipment, and the care work falls predominantly on the grandmother.

“It’s very tough indeed, But what else can you do?” she says. “If you are sick, you have to pay for the doctor yourself.

“We’re just workers, how much money do you think we have? We still have to eat, and we’re a big family.”

Experts say China has made huge strides in recognising rare diseases in recent years, creating a directory to raise awareness and share knowledge among clinicians and improving access to medication.

Studies have found that access to rare disease drugs have increased by 150% between 2017 and 2020.

But China was still a lot later to this than many other developed countries and so there are still major gaps in the support.

For Cai Lei, the fight that really matters is the one to try to find a cure. This is the only thing, he insists, that can truly save sufferers and their families.

We meet him on a warm summer’s day in Beijing. He invites us to the exclusive compound where both his home and small office is located.

He can still walk and speak but he has lost movement in much of his upper body, meaning his employees have to feed him and help with his medication.

Despite his condition his energy is remarkable.

He explains that almost as soon as he was diagnosed he vowed he would spend his final years doing what he could help fight ALS, and that’s what he has done.

A beacon of hope

In the past three years Cai Lei has established a platform to allow patients to more easily share their data with medical researchers; a portal to help sufferers in China contact and support each other; a campaign encouraging more people to donate their bodies to science; and an investment fund.

The family we spoke to described his endeavours as a beacon of hope for them.

He has assembled a small team who help him with this work, and he pushes them hard.

“Do you know how many times I would scold you if you were at JD.com for this pace of work?” he chides them at their morning team meeting – his background in China’s tough tech sector is clear.

But this is needed, he explains, as he knows he’s in a race against time.

‘I will fight until the last patient’

“It is the most hopeless, cruel and desperate of all terminal diseases. It is also very costly for the family,” he says.

“There are individual patients who do not get some support and are desperate, so they cannot support themselves and pass away fast.

“I want more people to know how desperate and helpless these patients and families are, and how much they expect scientists, biomedical companies, and medical workers to overcome this disease as soon as possible.

“We need more support and care from all walks of life.”

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Cai Lei is in many ways one of the lucky ones; he is wealthy enough to pay for round the clock care and his wife, who he married only shortly before his diagnosis, has vowed to support him throughout.

He speaks lovingly about how he found love at the age of 40 and had just had a son when his diagnosis came.

There have been real obstacles to his work, not least a reluctance from people to invest in research for a disease so rare and so little understood.

But he remains resolutely determined and remarkably optimistic.

“I’m not afraid of the difficulties,” he says, “and I’ll continue to move forward. I want to see a breakthrough and I will fight until the last patient for this.”

Anyone feeling emotionally distressed or suicidal can call Samaritans for help on 116 123 or email [email protected] in the UK. In the US, call the Samaritans branch in your area or 1 (800) 273-TALK

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