Former Vice President of JD.com, Cai Lei's "Re entrepreneurship": The Last Struggle for a Patient with ALS | Cai Lei | Entrepreneurship
More than thirty years ago, Cai Lei, who was still in third grade, met two older "thugs" after school. One of the boys slapped Cai Lei on the back of the head as a provocation. After being stunned for a few seconds, Cai Lei clenched his backpack strap and swung it behind the boy who was hitting him
"I know I can't do them, but if you dare to provoke me, I dare to do it with you." This was Cai Lei's simple understanding as an eight or nine year old boy at the time.
More than thirty years later, the skinny young man of that year gained many new titles and labels, including the former Vice President of JD.com, off campus mentors for graduate students from several well-known universities, and promoters of electronic invoicing in China... However, now his most important identity is as a protester against ALS. This time he encountered the most domineering and overbearing opponent, but his first reaction was still to take the initiative to attack.
You can't wait to die! The final struggle of a patient with ALS
At the end of September 2019, 41 year old Cai Lei suffered the biggest blow in his life, as his fate intertwined with one of the world's five incurable diseases, ALS.
"There should be only one possibility," said Fan Dongsheng, his attending physician and top expert in the diagnosis and treatment of ALS in China, in one sentence, completely rewriting the life of the then Vice President of JD.com Group.
ALS, also known as amyotrophic lateral sclerosis, has an average survival time of 2 to 5 years. Currently, there are no drugs to prevent or reverse the condition, and the effect of delaying the disease is weak.
Can a person who usually doesn't even want to wait for an elevator now have to wait to death? Hospitalization check ups, seeking medical treatment everywhere, witnessing patients leave... Cai Lei has experienced everything that ordinary patients have experienced.
Is there really no other way? He realized that he had to take the initiative to do something - since there was no medicine, he would take the initiative to promote research and development! In the following nearly four years, this became the most important task in Cai Lei's life, and he said he was "the last time starting a business.".
"I work for more than ten hours every day and need to reply with thousands of messages." When the reporter saw Cai Lei, it was a hot summer afternoon, and the highest temperature in Beijing exceeded 40 ℃. However, Cai Lei was too busy to eat.
After hastily finishing lunch, Cai Lei introduced his work progress to the reporter, "We now have more than 20 groups of patients with ALS, each with 500 people. The total number of patients now is over 10000."
The participation of these patients is crucial for the work that Cai Lei is currently doing. The research data platform for ALS, "Gradual Healing Mutual Aid Home," led by him, has reached over 10000 patients, becoming the world's largest research platform for ALS patients.
Compared to the past when there were only a small number of cases in various hospitals and data could not be connected, the establishment of this platform will greatly promote disease research and drug development. In the words of Cai Lei, researchers can not only obtain more sufficient research data, but also bring together a large number of patients, which is conducive to solving the problem of patient recruitment in clinical drug development and seeking investors, allowing them to see the investment value behind it.
"If we just wait, won't there be no hope?" Cai Lei said. People often feel that with the progress of technology, new drugs seem to be developed naturally, but in fact, this cannot be separated from human motivation.
"I don't have much time left for me."
After the illness, Cai Lei did not slow down the pace of work. Now he is almost filled with work except sleeping every day.
"You're committing suicide!" His wife and those around him once complained to him.
This is not a alarmist statement, as Cai Lei's condition is progressing at a visible speed. Around July and August last year, he could still use his phone to operate it, but by the beginning of this year, his hands were completely "useless". He had to rely on others to help him eat, drink water, and dress, and to operate the mouse, he could only rely on a special pedal connected to the computer to complete the work with his feet throughout the process. Even so, he still didn't stop to rest.
"My condition shouldn't have developed so quickly. I'm too tired and anxious every day, struggling every day."
Cai Lei's anxiety comes from time. Although death is a word that everyone avoids talking about, for patients with ALS, it is like a dark cloud that constantly hangs over their heads and they have to face it.
Over the years, many of the patients Cai Lei has known have already left. Some of them were not much different from normal people when they first entered the patient group, but soon had limited mobility, got into a wheelchair, and even ended up using a ventilator.
But drug development is a long cycle, usually taking at least 10 years or more, and investment is also astronomical, especially for rare diseases with a small audience. But for Cai Lei, who was sentenced to death, and tens of thousands of patients, they didn't have that long to wait.
Reading scientific research papers, contacting experts, and finding investors... Currently, the work of Cai Lei's team is calculated on an hourly basis. However, due to unclear investment prospects and other reasons, the promotion of drug research and development still faces many difficulties.
In the second half of 2022, Cai Lei opened his own Tiktok account, and more than two months later, he started the live broadcast of "Ice Breaking Posthouse". However, Cai Lei did not receive the income from live streaming from his own pocket, but instead used it to invest in scientific research and drug development.
"I don't have much time left for me. I'm not afraid of death, but who will do these things when I die? So we have been working hard and risking our lives, working 16 hours a day without a day off for 365 days." Cai Lei said.
"I may really be Don Quixote"
ALS has been discovered for nearly 200 years and its cause remains unknown. However, nowadays, a Chinese patient actually wants to challenge himself to overcome this terminal illness. Some people compare Cai Lei's behavior to "riding a bicycle to the moon," while others call him "Don Quixote.".
"I was surprised when I used such words in an interview. How could I become a Don Quixote? I am such a reliable person, and I analyze things rationally and objectively. I have steps, strategies, and strategies. In the past, I also started four consecutive companies. How could I become a vague and meaningless fighter? But after careful consideration, it makes sense in others' eyes."
Cai Lei said that over the past 30 years, top scientists and pharmaceutical companies have invested over $1 trillion in the treatment of neurodegenerative diseases. From a breakthrough perspective, almost all of them have failed. "As a patient, I may only have a quarter of my life left, or I may have passed away in six months. People who are not familiar with this disease often believe in my spirit and think 'I can definitely succeed'. People who understand this disease and do scientific research know that the probability of my success in doing this may only be 1/10 billion."
The questioning voice not only comes from professionals, but even patients and ordinary people will doubt the true purpose behind Cai Lei's "madness". "Is collecting patient information for personal gain?" "Do you still want to 'cut leeks' when you have a terminal illness?" "Isn't it just to save yourself!"... However, for Cai Lei, he doesn't have time to defend these doubts one by one. ".
Looking back at his work in recent years, is he really a stubborn Don Quixote?
Cai Lei said that in the past 200 years before the first half of 2020, there were only 14 clinical trials of drugs in China related to ALS. However, from the second half of 2020 to now, Cai Lei and his team have worked hard to promote drug development through more than 100 pipelines, and the speed has greatly improved.
"It's difficult for people to persist in doing something they don't even believe in. Since I'm doing it, I firmly believe that there will be a breakthrough in this matter with me. It may not save my life, but there will definitely be new breakthroughs."
Will there be a successor?
In order to overcome ALS, Cai Lei has spared no effort in recruiting top students from prestigious universities to join his team at high salaries over the years. However, there are very few people who can truly persist in staying.
"These top students all have a good way out, they can go to research institutes, medical and health institutions, they are very stable and have sufficient social status. Come to me, as a research individual, and work with a 'crazy person' who doesn't even have a life, do you have a future?"
Cai Lei is well aware that in the eyes of smart people, the work he does is "worthless" and a "waste of career", so the smarter the person, the less likely they are to persist. On the contrary, some things require some foolishness, to believe and persist foolishly.
Looking back at his entrepreneurial experiences in the past few years after falling ill, he joked with a smile and said, "I used to work hard, and now I work hard too. But in the past, I worked hard for the so-called career, and even for the so-called profit of the enterprise. Now, the more I work hard, the less money I have. But instead, I feel that what I do is more valuable."
Of course, he would prefer to find a successor to continue his career, as no one knows when his life will come to an end.
However, stubborn Cai Lei still has his last bullet - his own body. He decided to donate his brain and spinal cord tissues after his death, promoting the donation of brain and spinal cord tissues for patients with ALS, and shooting the last bullet.
Since 2022, under the call of Cai Lei, more than a thousand patients with ALS and their families have actively responded. Duan Shumin, an academician of the CAS Member and director of the academic committee of the National Human Brain Resources Bank for Health and Disease, once described it as an "unprecedented feat".
At the end of the interview, the reporter asked Cai Lei this question: If life really came to an end, how would people evaluate themselves?
He said, "I have no life left, so how to evaluate me is no longer important. Most importantly, I hope to pass on my spirit of resistance that I will not give up, because it can help others."
