Cai Lei, former executive of a major company, reveals how ALS diagnosis set him on the path to find a cure, Yang Yang reports.
Two big, bold characters stand firmly on the cover of the book Xiangxin (To Believe), as if written by a swift and resolute hand with a heart of fortitude, in ink that turns from black to the color of blood as it moves to the right.
The preamble on the cover states: "Even in failure, never surrender."
That is how Cai Lei, former vice-president of JD Group, faces amyotrophic lateral sclerosis, or ALS, which he was diagnosed with in 2019, at the age of 41. The book, published recently, tells vividly the story of his unique battle with this terminal illness.
Born in a small city in Central China's Henan province in 1978, Cai has been profoundly influenced by his father's idea that "one has to fight for himself".
Cai's father, the eldest of seven children born to a poor farmer's family, was a veteran, and applied military-style discipline in the home, urging Cai and his younger brothers to study hard and fight for a better future.
Since the fifth year of primary school, Cai has been getting up before 5 am to run, practice boxing and study English. Highly self-motivated, he pushed himself to finish every examination within half of the set time. In most examinations, he scored full marks, a feat for which he was nicknamed "alien".
Indeed, he was very much interested in science and UFOs, planning to study space physics at Peking University, but his father ordered him against his will to study finance and taxation at the Central University of Finance and Economics. For parents who had lived through poverty, securing a stable job was the most important thing.
After graduating from university, he became a civil servant, and later completed postgraduate studies at CUFE.
He chose to start his career at Samsung's headquarters in Beijing as a tax manager. At 29, he became chief tax manager in China Vanke Co. At the end of 2011, Cai joined JD Group.
One of his most well-known achievements is that at an unusually fast speed, he led his team to develop the first electronic invoice on the Chinese mainland, which helped save tens of millions of dollars for the company every year, and was adopted by many other industries. Wherever he works, he always tries his best to create new value, day and night.
That is why he didn't get married until 40. He met his beloved wife Duan Rui, a beautiful Peking University graduate, through a blind date and asked her to marry him on the second date — again displaying his typical speed. With his son's birth, Cai had an enviable life — until Sept 30, 2019.
The muscle on his left arm had been throbbing for 13 months and after visiting different doctors in Beijing, he was introduced to Fan Dongsheng, a leading ALS expert in China.
That sunny afternoon, sitting in Fan's office, he heard the doctor say: "Then only one explanation remains."
"Am I going to die?" he couldn't help joking, but nobody laughed.
The doctor stared at him sternly. He separated his two hands about 20 centimeters from each other, saying, "this was your original life expectancy". Then his left hand quickly moved toward the right one, almost touching it, and said, "now this is how long it will be".
The world suddenly turned dark for Cai. Things had been moving fast in his life, and now life itself was accelerating. He would have only two to five years to live according to the average life expectancy of ALS patients.
After struggling for a while, he decided to tell his wife about his disease and offered a divorce since they had only been married for a little over one year. At the end of his life, muscles unable to move, he would have to fully rely on his family. He did not want his wife to suffer.
Duan rejected his offer, saying: "To marry someone is to have support when unfortunate things happen and now I am your support."
Developing new treatments
In the first six months after the diagnosis, Cai couldn't sleep well. He did not stop his work at JD. One night in the hospital, he was still working though it was nearly midnight. Raising his head up, he found his wardmate, surnamed Zhu, who usually slept earlier, was still awake.
Cai asked him: "Why don't you sleep?" Zhu replied: "I'm waiting for you."
It suddenly occurred to Cai that, in a previous chat, Zhu had asked him whether he would be disturbed by snoring. Cai had replied without much consideration: "Sure. But it won't bother me if I fall asleep first." He realized that Zhu had kept his casual words in mind and was waiting for him to sleep first.
Zhu was just one of Cai's fellow ALS patients in China. Fan's team from Peking University Third Hospital estimated in 2021 that 2.97 out of every 100,000 people in the country suffer from the disease.
Since being hospitalized, Cai has come to know a lot of patients like Zhu from across the country, and some of them were illiterate. He wanted to help them.
ALS is a neurodegenerative disease, usually caused by the gradual death of neurons. Human muscles are controlled by motor neurons and when they die, muscles will gradually atrophy, so that normally easy movements like drinking water, eating, wearing clothes, going to the bathroom, typing or speaking will become impossible. In the end, the body will collapse like a melting candle. Unable to speak or swallow, patients will completely rely on machines and others' help to survive.
So far, there have been only two medicines that are effective enough to be approved to treat ALS, but they can at most extend patients' life for two to three months without improving their living quality.
To develop effective therapeutic agents might be the only way to save ALS patients. However, although ALS was first discovered in the 1820s, after nearly two centuries, its cause and cure still remain unidentified.
This is partly due to the intense effort required, which is unprofitable for so rare an illness.
It usually takes 10 to 15 years to complete the research cycle for a new therapeutic agent. The cost is between $1-3 billion. Take Alzheimer's disease for example. According to the Pharmaceutical Research and Manufacturers of America, between 2000 and 2017, investment in new therapeutic agents for this much more common disease passed $600 billion, and 99.6 percent of the research on more than 300 agents failed.
Cai decided to take matters into his own hands. In 2019, he started his own medical technology company, and built his own research team.
In April 2021, Cai and his team hosted an event about rare diseases, inviting big pharmaceutical companies to attend. He found that almost none of them had an R&D pipeline for ALS.
"This is the cruel reality, but we can't wait. We need to fight to save ourselves rather than count on others," he said.
For him, accelerating the R&D of new medicines and letting as many patients as possible take part in clinical tests can serve as a silver lining for his fellow patients.
"In the last three years, we have advanced the R&D pipelines of more than 70 therapeutic agents and half of them have failed," he says. Cai himself has volunteered to try more than 30 new medicines that passed hospitals' ethical assessment, which all failed.
However, he is optimistic, because failures mean he is getting closer to truth, he says.
Another breakthrough he has created is removing the data barriers between hospitals which made it difficult for experts to efficiently monitor and analyze patients' situations or to test new drugs.
Cai, having worked in the IT industry for years, naturally thought of building a big data platform that could collect the information of ALS patients and process it for research purposes. They have invited experts to help design the platform.
Since being established in 2020, the platform has collected data from about 10,000 ALS patients, making recruiting volunteers for clinical testing of drugs much easier. Last year, two hours after releasing a volunteer recruitment notice on the platform, more than 700 patients signed up.
However, as a project that is, in Cai's words, "more difficult than a mission to the moon", developing a new therapeutic agent needs a great amount of money.
Having raised billions of yuan worth of funding in his professional career, Cai thought he could easily achieve the goal of one billion yuan ($142 million), but after 200 road shows, no investor wanted to waste their money on a mission impossible.
"That's why we shifted our focus from investment to charitable funds and a welfare trust one year later," Cai says.
Investors are willing to pour money into a promising project, which means "you should complete the first stages with scientific breakthroughs, experiment results and data. So now we mainly focus on the first stages, helping people with technical capabilities to conduct their experiments," he says.
Donating to science
Cai refuses to charge patients for using his big data platform.
"According to normal business logic, we provide services and products to customers, and they pay, but I can't do that," he says.
As a man who never surrenders, Cai has decided that even if all efforts prove fruitless, he will not give up. To shoot the last bullet, he has decided to donate his brain and spinal cord for scientific research. He will not die for nothing.
Motivated by his example, nearly 1,000 patients have decided to donate their brains and spinal cords for medical research.
Duan Shumin, a researcher at the Chinese Academy of Sciences, called it "an unprecedented feat", because although China's brain bank has been established for 10 years and has collected more than 300 specimens, not one is from a patient with a rare disease.
In July 2022, the first specimens of an ALS patient's brain and spinal cord were successfully collected, which was not an easy task.
When an ALS patient dies at home, who will transport the body? And to where? Who is going to do the postmortem, and who will pay for it? Cai needs to solve all these problems.
Since attracting investment is not practical, Cai has found another way to make money for his cause — selling goods via livestreaming platforms. On Douyin, he gave his account the name "Icebreaker Station", which is to provide supplies for conquering ALS.
At 8 pm, Sept 21, 2022, Cai held his first livestreaming event, which lasted two hours. He emphasizes that on the channel, he is not looking for sympathy but sharing his life experience with people and giving them some inspiration. More than 1,000 people purchased goods from his channel that night. All the money will be used in the R&D of ALS treatments.
Now Cai's arms cannot move and he needs help to drink water. During the night, when he is awakened by pain, he cannot turn over. Sometimes he falls down as the atrophy develops in his legs and feet. He is closer to death since many ALS patients die due to falling because they cannot protect their head.
In December, Cai was infected with COVID-19, but he didn't stop working. Even with a fever of 39.1 C, he was still reading research papers in the office.
Now at work, he uses his mouse with his feet. He has also started using automatic speech recognition but the muscles in his throat have become weak so his voice turns hoarse and sometimes his sentences cannot not be correctly recognized. In the end, he has had to rely on an eye tracker.
"I won't give up. I don't consider work from the perspective of difficulties or possibilities. I just see whether it's worth doing," he says.
In March 2022, Cai started writing the book. Unable to type, he wrote it through dictation.
"In the past three years, when COVID-19 hit the world, people felt anxious and sometimes desperate, so I want to give people some inspiration. Actually, the plight and impasse you are facing is not really hopeless. People like us are still trying. If you have faith, if you believe that where there is a will, there is a way, if you try hard, you will find hope," he says.
"I also want to write this book for my son. I may not be able to accompany him when he grows up, but I want to set a good model for him. Soon I will be unable to speak, but watching what his father does, hopefully he will emulate me in trying to be a respectable person rather than a hedonist," he says.
By reading the book, people will also learn the truth about ALS, including the course of the disease and the development for potential treatments, he says.
"Like I told my wife, now I have completely accepted death without any regrets because I have tried my best," he says.
Contact the writer at yangyangs@chinadaily.com.cn
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