I believe that everyone has seen or heard of the movie "I Am Not a Medicine God", and many people have been touched by the protagonist's spirit and behavior of having the people in mind and taking risks. Afterwards, director and lead actor Xu Zheng also stressed that the film was adapted through real events.
And the world is big, there will always be déjà vu things happening. After the release of "I Am Not a Medicine God", another real version of "Medicine God Father" was well known to everyone.
"I'm not a medicine god, just a father!" Xu Wei said
The original Xu Wei was just a father with a high school education, and he originally had a happy family and a well-behaved son, who knows, but heaven made a joke with him. His youngest son, Hao Yang, suffered from an internationally rare disease, Menkes syndrome. His own son, he did not expect that one day, he would also become a member of rare disease patients.
Derived from a screenshot of the video
What is even more desperate is that during Xiao Haoyang's illness, during the epidemic, the only genetic company in the world to produce targeted drugs was far overseas, and there was no way for Xu Wei to buy drugs. At the same time, the doctor also gave Koharu Yang a "death period", menkes syndrome patients, can not live for more than 18 months.
Under great pressure, as well as the love for the child, all parties are mixed with emotions, so that Xu Wei is desperate to take risks, on September 29, Xu Wei posted on Weibo: He wants to make his own drugs to save the child's life!
During the development of drugs, the difficulties inside, for Xu Wei, who has a high school education, can be imagined. But he had to go through papers and various studies, injecting experiments into rabbits and himself.
Perhaps heaven was touched by his father's love, Xu Wei miraculously developed a "histidine copper" similar to the composition of genetic drugs, and through self-research drugs, his son's condition was alleviated and curbed.
"But the medicine I made still only alleviated the child's illness." Specific hopes for cure still have to wait for genetic drugs from regular pharmaceutical companies. I know that I am breaking the law by making drugs without permission, and I don't need everyone to call me the so-called "medicine god", I am just a father, and I have fulfilled my father's responsibilities!" Xu Wei said solemnly in the face of the interview.
Screenshot of the source video
Knowing the case of Xu Wei, I don't know what the readers think, and some friends may think that he is reckless and inappropriate in breaking the law; Some people will also be touched by Xu Wei's father's love. But in it, a rather thought-provoking question is revealed:
"Rare disease patients, is there really no way out?"
Looking back at Kohagi's condition: Menkes syndrome. There are not necessarily more than three-digit patients in the world, because it is a rare disease, there is only one company in the world, the only way to deliver drugs, once this road is cut off due to factors such as the epidemic. This means that patients can only "wait for death". Unless, like Xu Wei, the "father of the medicine god", he opens up the road with his own hands, but whether this road can really go on forever is still unknown.
It can be seen that for now, the lives of rare disease patients are still in turmoil.
Some friends may be unconvinced: "Modern medicine is so developed, Menkes syndrome is not as difficult to overcome as cancer, why can't our country develop such drugs on its own to help patients with rare diseases?"
Why is it so difficult for countries to help develop drugs for rare diseases?
It is true that similar to Menkes syndrome, there is no hepatitis B, cancer is so difficult to overcome, but the reason why it is difficult for the country to hepatitis B, cancer drug research, vigorously support, there are deep reasons.
Reason one: Few drug manufacturers are willing to take over rare diseases
The reason why rare diseases have an embarrassing position is mainly due to the word "rare".
In other words, rare diseases lie in "rare", and the ingredients, manpower, and material resources required to develop a new drug are enormous. Not to mention failure, even if the research and development can be successfully achieved, the cost of research and development cannot be shared by rare disease patients. It is precisely because of this that the price of rare disease drugs will be ridiculously high, and patients with poor families will not be able to afford it.
Research and development is expensive and laborious, and the result is that the price of drugs is high, and the high price will lead to patients' reluctance to use, which is a cycle. In our Chinese saying, it is "thankless", such a hot potato, naturally no drug manufacturers are willing to take over.
Reason two: It is difficult to include in medicare
As far as China is concerned, most common diseases can be offset by medical insurance to offset part of the cost of treatment, and then help the people to reduce the threshold of medical treatment.
The principle of medical insurance is "to settle revenue and expenditure, balance of income and expenditure, and slight balance", which can be predicted and controlled, so as to ensure that the social welfare of medical insurance can always exist. In other words, medical insurance is also a means for the state to support patients with a class of diseases.
But because of this, if you blindly include a rare disease in medical insurance, it is difficult for medical insurance to bear the sky-high price of drugs formed by the cost of research and development.
The same is true of Xu Wei, the "father of the medicine god", even though he can now take risks and develop his own drugs to alleviate his son's condition, but this is only temporary. The high price of rare disease gene drugs and the transportation routes that have been blocked because of the impact of the epidemic are the two "mountains" that Xu Wei is about to face, although it is difficult, we still sincerely wish Xu Wei and his son and his family to survive this disaster.
But then again, after listening to the above remarks, everyone should not be too pessimistic, the country is still in action. All along, China's drug supervision, are actively negotiating with the gene companies to which all kinds of rare disease drugs are developed, and strive to make the most rare diseases into China's medical insurance at the lowest price, and do our best to save more lives, such as the sky-high drug "Glenin" mentioned in the movie "I am not a medicine god", under the efforts of the state, it has been successfully included in medical insurance and has become a "conscience drug" that patients can afford. It is believed that in the near future, Xiao Haoyang's illness can also get attention, and the dawn of Xu Wei's family will eventually come.