Source: CCTV News
On December 3, the results of the health insurance negotiations were released
It is used for the treatment of rare spinal muscular atrophy
Drugs are covered in Medicare
The father of a sick child could not help but sigh
"I thought I was going to cry
But when I saw the news, I couldn't cry
After more than three years, we are finally looking forward to it! ”
△ Video courtesy of respondents
My son was diagnosed with a rare disease
Doctors say they may not live to be more than two years old
The man in the video is named Ma Hengxiang
His son Stone was 8 months old
He also often sat crooked
The two legs are also completely unable to move
Only the feet can shake slightly
Ma Hengshu took the stone and did a lot of examinations
He always remembers the day of October 8, 2018
Stone just 9 months old
Be told by the doctor that it is likely to have it
Spinal muscular atrophy
The disease is manifested primarily by generalized muscle weakness
Worsening of the condition can lead to abnormalities in the body's systems
Until respiratory failure
"The doctor told me
Stone probably won't live to be two years old."
Soon, Ma Hengxiang received it
Genetic analysis report of the son being diagnosed
It was like a thunderbolt on a sunny day for their family
The stones in the onset of the disease have repeated fever and diarrhea
"Can you feel that despair?
Our whole family lost weight
I even thought of the worst-case scenario."
△ Stone
Faced with a situation where there is no cure
He took his son on rehabilitation
Ma Hengxiang's family, which was hit hard
Never bowed to fate
"Although the stone is small
But he can feel the emotions of his parents
For the stone, our whole family decided to work together"
Because the special drug was not yet listed in China at that time
Treatment can only be based on rehabilitation
The stones are to be thunderous every day
Do a few hours of rehabilitation
Grab the pole, stand on the wall, crouch up...
These normal children can easily complete the movements
Stones require a huge amount of physical strength and effort
Ma Heng said that the training did not stop for a day
This is also his treatment for his son
"The only thing that can be called strict"
After more than half a year of hard work
The stone can sit still and turn over
△ The stone is trying to prop his head on both hands
Although it has improved, it still cannot be stopped
The muscles of the stone atrophy and the joints are deformed
"I can't lift my arms, I can't straighten my legs
We are worried that the condition will continue to deteriorate."
Scrape together money for treatment
The son's physical function slowly improved
According to Ma Heng' detailed introduction
In February 2019, spinal muscular atrophy was used as a special drug
Approved for listing in China
But the price of a needle is nearly 700,000 yuan
The annual cost is more than 1.1 million yuan
This gave the Ma Hengxiang family a hope that had just been ignited
The moment was extinguished again
"From being sick and not having medicine to having medicine that can't be afforded
As parents, pain torments us every day."
△ A special drug for the treatment of spinal muscular atrophy
In January this year, the cost of "sky-high drugs"
That's down to about $550,000 a year
Ma Heng finally put together his son to get the needle
With rehabilitation
The kinematic function of the stone is slowly improving
"My arms and legs can be straightened
You can even stand against the wall for longer
It's a process that constantly surprises us
Don't know which day he will be better."
△ Stone family of three
"Sky-high life-saving drugs" were included in medical insurance
"Thank you to our great motherland"
"Is this the final offer you confirmed?"
Please confirm"
"Yes"
"Okay, deal"
With the negotiation of a "deal"
A specific drug for spinal muscular atrophy
The final price is about 33,000 yuan per bottle
Ma Heng elaborated on the health insurance negotiation process
He watched it on his cell phone at work
Because of the concern for the colleagues around him, he strives to control his emotions
But I still shed tears while watching
"It was really exciting and happy
From the disease without medicine, to 700,000 yuan a needle from 550,000 yuan per year to include medical insurance
This moment is in addition to thanking the great motherland
I really don't know what language to use! ”
Ma Hengxiang also cheered up Xiao Shi and himself
"I hope that the child will one day be able to regain his self-care ability."
Little Rock and Little Rock Daddy both have to cheer up! ”
△ Ma Hengshu and son Stone