No one should be given up!

When Zhang Jinni, the negotiator of the National Medical Insurance Agency in the video, said the word "deal", almost all parents of children with spinal muscular atrophy (SMA) cried
.
On December 3, the 2021 medical insurance negotiations ended, and Noxinagen Sodium Injection was included in the medical insurance
.
Nocinasheng Sodium Injection has been on the hot search several times before because of "700,000 per injection" and "550,000 in four days", but this time it was on the hot search because the sky-high price of the drug was reduced to 30,000 after the national medical insurance negotiations.
Multiple needles
.
After the news was released, Ma Hengxiang, the father of a child with SMA, could not sleep for several days.
As soon as he closed his eyes, Zhang Jinni’s words at the medical insurance negotiation site appeared in his mind: “Every small group should not be given up.
"
.
Learned that it was included in the medical insurance list.
The parent group of quiet children on weekdays fryed the pot.
Ma Hengxiang learned that Nocinagen sodium was included in the medical insurance list in the SMA patient group
.
In this group of patients, apart from occasional parents of children who consulted about medication, and then left a sigh of "oh" for the sky-high price of Nosina sodium, few people spoke
.
The only communication is that the parents of the children resell their own suction machines and ventilators every three days
.
On the morning of the announcement of the 2021 medical insurance catalogue, the news in the group kept flickering, in Ma Hengxiang's words, it was "fried
.
" The parents of the children in the group cried.
Some mothers who had just gotten up after taking care of their children all night cried under their covers; some did not want their children to see their usually strong parents crying, so they hid in the toilet and cried.
Hide on the balcony and cry
.
The group was quiet for a while after "exploding the nest", and everyone was venting the emotions held in their chests
.
After a few minutes, someone "thanks to the country, thanks to the government" and "thanks to everyone who cares about us".
.
.
Ma Hengxiang has imagined the scene when he heard the news many times.
In his mind, if he knew of Nosy After that raw sodium enters the medical insurance list, I will be very excited
.
However, the reality is the opposite.
Ma Hengxiang is very calm, and he feels his body relaxes like never before
.
He picked up the phone and told his wife first, and then dialed the phone to the parents who were taking the sick son, Xiao Shitou, to recover.
The two elderly people asked, "Really?" When they got the affirmative answer, The old man almost cried with joy
.
Later, the video of the negotiation between Zhang Jinni, the negotiator of the National Medical Insurance Administration, and the pharmaceutical company was forwarded in various groups
.
There are 30,000 to 50,000 cases of SMA in China.
The incidence rate is about 1 in 10,000.
Ma Hengxiang did not cry because he never wanted to show his tears to people around him.
Subconsciously, he felt that as the backbone of the sick family, he must Be strong
.
And he didn't want to spread his grief to the people around him.
He felt that everyone was trying their best to help him.
If they were still affected by their own emotions, it would be too innocent
.
Under Ma Hengxiang's desk, there is a small bench, which is the place to record his tears
.
Whenever he couldn't bear the pressure and pain, he would go under the desk, sit on the bench, and cover his tearful face with a cloth
.
Except under the desk, the street may be the only place where Ma Hengxiang would cry in public, because he saw the lively and lovely children jumping on the street and thought of his son, Little Stone
.
Little Stone is almost 4 years old this year.
If it hadn't been for the illness, he should have been learning to play with his friends in the kindergarten
.
Three years ago, Xiao Shitou was diagnosed with SMA, which is the English abbreviation for spinal muscular atrophy, and is also known as the "killer of infant and young children genetic disease" and "the number one genetic disease that causes death in infants and young children
.
" It is a rare disease that causes muscle weakness and muscle atrophy due to degeneration of motor neurons in the anterior horn of the spinal cord.
The incidence is about one in ten thousand
.
Currently, there are approximately 30,000 to 50,000 cases of this disease in China
.
Most children with SMA begin to develop symptoms at the age of six months.
If interventional treatment is not performed as soon as possible, the children generally will not live to be 2 years old.

.
SMA is an autosomal recessive genetic disease.
Usually, the parents of the child are carriers.
The child’s motor neurons located in the anterior horn of the spinal cord and the lower brain stem are lost and degenerated, resulting in severe muscle atrophy, weakness, and illness.
Children have difficulty even turning over, kicking their legs, and crawling.
They may eventually lose the ability to walk and have breathing and swallowing difficulties
.
For the families of these children, Nosenagenic Sodium is their hope.
This is an imported precision targeted drug with a dose of more than 500,000 yuan per injection.
The drug needs to be taken for life.
For families with children, it is very huge.
Burden
.
When Ma Hengxiang learned that his son, Xiao Shitou, was diagnosed with the disease, he was desperate.
He thought the disease was "incurable
.
" Later, he learned that medicines are available and imported medicines are imported from abroad, but they need RMB 5 million in the first year
.
In 2019, the domestic introduction of Nosina Sodium, the price is 700,000 yuan for the first injection, about 1.
1 million yuan a year
.
Ma Hengxiang is a media reporter and his wife is a people’s teacher.
For them, 1.
1 million yuan a year is simply unbearable
.
With the passage of time, the patent period of Nosina Sodium is over, and the same medicine is reduced to 550,000 yuan a year in China
.
It is understood that because of the small number of patients and limited sales of this drug, companies are generally unwilling to significantly reduce the price
.
In this adjustment of the medical insurance catalogue, the National Medical Insurance Administration negotiated with pharmaceutical companies to "change the price by volume" to make the price drop significantly
.
The six needles of 550,000 yuan in the first year of the small stone is Ma Hengxiang spent all the family savings, and also took part from his parents
.
Fortunately, colleagues and friends are also willing to help Ma Hengxiang, plus part of the commercial insurance claims, the cost of 550,000 yuan is finally collected
.
Video recording the son’s treatment process.
In order to make a living and let the society know about SMA, Ma Hengxiang and his wife have to return to work for the second year's medicine expenses
.
However, Ma Hengxiang understands that any outside help cannot be long-term
.
Later, Ma Hengxiang opened a Douyin account.
He posted videos of Xiaoshitou's treatment on the Internet, recording the daily life of children fighting with the disease, and introducing common sense about SMA, a rare disease to the outside world
.
Ma Hengxiang's main purpose of doing this is to let the outside world know about the family of children with SMA, hoping to arouse the attention of the society and let netizens know what the group behind this disease looks like
.
More importantly, through his video, more people can understand the cause, diagnosis, treatment and prevention of SMA
.
Ma Hengxiang said that the genetic carrier rate of SMA is actually very high, about one in fifty.
If two carriers form a family, there is a one-fourth chance of giving birth to a child every time a normal pregnancy occurs.
This probability is actually terrible
.
From the overall data, the incidence of SMA is one in ten thousand.
From a probability point of view, SMA is actually a common disease among rare diseases
.
"One out of 10,000 newborns may get the disease.
This is actually a terrifying probability
.
Therefore, young couples should be aware of this disease and undergo examinations before marriage.
It does not matter if one of them is not a carrier.
If both If you are a carrier, you must screen the fetal genes when you are pregnant.
If unfortunately there is a fetus with SMA, you must induce labor as soon as possible, so that you can have one less unfortunate family like yourself
.
" Ma Hengxiang is actually a very honest person.
He admitted that he opened an account on Douyin.
In addition to popularizing the knowledge of SMA, he also hoped to have more channels to make money.
At the beginning, he didn't know how to live broadcast the goods, and he was not a good at expressing in front of the stage.
He is just the father of an ordinary child
.
However, some netizens later suggested that he live broadcast, and also helped him understand the process of live broadcast
.
Some netizens once persuaded him to use crowdfunding to solve the problem of the child’s 550,000 yuan in medical expenses per year, but Ma Hengxiang refused.
He is more willing to use his own efforts to find a solution for his son’s illness.

.
On the Internet, although he will encounter bad words, Ma Hengxiang can feel the goodwill of most people.
Douyin has also become a place to express his pressure, and he feels the power brought by netizens
.
Some netizens sent him a private message saying that they had been infected when they saw that families with children like them were working hard
.
Ma Hengxiang himself said: "As a reporter, I have been in contact with many self-improving families in the past.
I can feel their strong spirit.
I was only touched by them in the past, and I forgot it after a while
.
But since my child became ill, every time I came into contact with such self-improving people, I was inspired by their spirit and gave me a kind of strength
.
Spiritual power can infect people
.
When everyone inspires me, I can also In this way to inspire other people
.
” After the medical insurance policy is implemented, plus the reimbursement family can basically bear it.
On December 3, Nocina sodium enters the medical insurance catalog, which is only the first step for families with children with SMA
.
In the future, local governments will also determine the landing price of Nocina Sodium based on the medical insurance situation in each region
.
Ma Hengxiang calculated this account with his fingers.
The child’s first year of illness cost 550,000 yuan for the injection alone.
Now this medicine has dropped to 33,000 yuan per injection.
According to the course of treatment, only three injections per year are needed, and it’s for a year.
99,000 yuan, if you add reimbursement, a family like yourself can basically afford it
.
Ma Hengxiang introduced that the cost of rehabilitation and physical therapy for children with SMA is also very high
.
These children often have poor lung development and need to use a ventilator to help breathe.
An imported ventilator costs 30,000 to 40,000 yuan
.
Children with SMA also have poor resistance.
They are prone to catch a cold and easily turn into pneumonia after catching a cold.
This requires a sputum suction machine and costs 20,000 to 30,000 yuan
.
When the child is a little older, he needs to use a standing frame to help the child have the awareness of standing and prevent the bones from deforming too seriously.

.
Now, Ma Hengxiang has a new plan.
He intends to replace the little stone with a better standing frame
.
"The critical recovery period for a child is actually very short.
If we can have good recovery conditions and training, we still have to do our best to recover him without leaving any regrets
.
Then we will go again if we are able in the future.
Help more people
.
" Ma Hengxiang said
.
Last year, Xiao Shishi's condition improved, his arms were raised, the atrophied muscles in his legs were relieved, he sat more stable than before, and his waist, abdomen and leg strength continued to improve
.
Xiao Shitou is now almost 4 years old.
He realized that he is different from other children.
He recently said to Ma Hengxiang: "Dad, can I
leave in the future? I want to help grandma wipe the table .
" Ma Hengxiang still recorded the children's daily life.
On the Internet, he hopes that these words and deeds of his children can tell everyone: "Our families are working hard to live, and we have not given up
.
"