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Want to get a needle, ten thousand thoughts! The 8-year-old boy with rare disease got his wish

author:Beiqing Net

8-year-old Lele

Have a rare disease spinal muscular atrophy (SMA)

Due to family financial difficulties

Only intermittent treatment for 12 days, in Ningbo Women's and Children's Hospital in Zhejiang Province

Lele was treated with Nocinasin sodium injection

He became the drug after a sharp price cut was included in Medicare

The first patient in Ningbo to benefit

Want to get a needle, ten thousand thoughts! The 8-year-old boy with rare disease got his wish

"Sky-high drugs" are included in medical insurance

Nearly 700,000 yuan per needle fell to more than 30,000 yuan

By estimate

China's neonatal SMA patients add about 30,000 new patients per year by 1,200 people

Northinalsan sodium injection

It is the first imported drug approved for treatment in China

When entering the Chinese market

The price per needle is nearly 700,000 yuan

This is undoubtedly a sky-high price for patients

Want to get a needle, ten thousand thoughts! The 8-year-old boy with rare disease got his wish

Drug negotiation site in the 2021 Health Insurance Catalogue

Zhang Jinni, negotiator of the National Medical Insurance Bureau

Repeatedly discuss prices with corporate negotiators

Be a negotiator for businesses

The first round of quotation is 53680 yuan per bottle

Zhang Jinni said bluntly

"We want companies to offer in the first round

We must show the greatest sincerity

Every small group should not be abandoned."

Want to get a needle, ten thousand thoughts! The 8-year-old boy with rare disease got his wish

Every round of quotes since then

Zhang Jinni will use the word "effort" throughout

"You have to do more

Really don't want to have a lot of routines"

"In the thousandth, you still want it

Not a particularly small effort to do "...

After a long negotiation of one and a half hours, the representatives of the company left the table eight times to negotiate the final transaction price of each bottle of medicine

More than 20,000 yuan less than the initial offer

"Today is the day when Lele regains its new life!"

Lele born in 2014

Since the beginning of the toddler

It has an abnormal gait and falls easily

In 2018, Lele's illness worsened

The legs can't be opened, the feet can't be lifted

It was diagnosed with the rare disease SMA

Want to get a needle, ten thousand thoughts! The 8-year-old boy with rare disease got his wish

Actually, back a few years ago

The Lele family knew about this special medicine

But the sky-high price of 700,000 yuan a needle

Let them "hope for medicine"

Until the "sky-high price drug" was included in medical insurance

The family has ushered in hope

On January 12, Lele said before receiving injection treatment

"I'm not afraid of needles

Be a brave man."

"Needles, thoughts, thoughts, thoughts, ten thousand thoughts."

As long as the injection is given, I agree to anything."

The day of receiving treatment

Lele's uncle said

"Today is the day when Lele regains its life"

Want to get a needle, ten thousand thoughts! The 8-year-old boy with rare disease got his wish

"Every small group should not be abandoned"

Come on! May Lele recover soon

Source: CCTV News WeChat public account (ID: cctvnewscenter) comprehensive Ningbo Evening News

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