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A baby with proliferated blood vessels due to a rare congenital disease that causes lumps and severely swollen legs is unable to use even though there are curative medicines.

The pharmaceutical company even said that they would give you medicine, but why can't you take it, let's take a look at what medical reporter Cho Dong-chan said.

<Reporter>

13-month-old Ho Bin has a lump of red blood lumps on his back and buttocks.

The left leg, where the blood hump wraps around its entirety, is swollen like an elephant's leg.

[Patient's mother: (Ho Bin) keeps falling because he wants to walk.

It threatens the rapidly growing veins or even lives.

[Lee Beom-hee/Professor, Department of Pediatrics, Asan Medical Center, Seoul: The proliferation of blood vessels has just burst like this, so this may cause a dangerous situation for the child...]

The treatment medicine is licensed to be used from the age of 2, so Ho Bin thought he would have to hold on until then.

But it wasn't.

A paper on the therapeutic effects of babies younger than Ho Bin Yi was published.

[Lee Beom-hee/Professor, Department of Pediatrics, Asan Medical Center, Seoul: It's very similar to Ho Bin, isn't it? After 12 months of treatment, it has gotten this much better. When I see this, I just can't stand still.]

The doctor and caregiver went through the procedure, and the drug company said it would support the drug free of charge.

However, the KFDA Expert Committee did not allow Ho Bin to use the drug, saying that he was less than 2 years old.

[Patient's mother: I really tried my best to do something every day so that I could give this medicine quickly...]

The guardian began to investigate himself.

[Patient's father: I contacted them personally, and I pulled out a list of hospitals in the U.S. and hospitals that did clinical trials on this drug.]

Within a week, five babies under the age of two were identified in the United States who were being treated with the drug.

We also found a European paper showing that it is effective for under 2 years of age.

[Patient's father: I contacted a doctor in Europe and Italy, but this morning I received a reply urgently, so I have official data....] [Patient's mother: I think it is very unfair that people who do not objectively know the child's situation (expert committee) refuse and do not provide medication to the child during the growing up period, which is precious to the child every day.]



(Video Interview: Han Il-il, Video Editing: Ha Sung-won, CG: Kim Jong-un)

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<Anchor>

Cho Dong-chan Medical reporter

Q. MFDS, why is it not allowed?

[Cho Dong-chan/Medical Reporter (Specialist): The MFDS said that the data submitted by the attending physician lacked explanation, but the attending physician complained that he did not have the opportunity to do so. Let's hear it for yourself.]

[Lee Beom-hee/Professor, Department of Pediatrics and Adolescents, Asan Medical Center, Seoul: I asked (the expert committee members) to give me a chance to persuade them, but they said that they can't even give them that opportunity now because some kind of anonymity of the experts has to be guaranteed.]

[Cho Dong-chan/Medical Reporter (Specialist): After the interview began, the MFDS said that if the parents apply for permission again, the attending physician will give them a chance to fully explain. Since the child's condition is urgent, I hope this process will proceed quickly.]

Q. I found my parents, but why couldn't I find the expert committee members?

[Cho Dong-chan/Medical Reporter (Specialist): Patients with rare diseases are very rare. However, there are more than 8,000 rare diseases. Currently, it is not easy to deal with all 8,000 of them professionally with the personnel of the Ministry of Food and Drug Administration and the Korea Disease Agency, and we need support for this. However, I hope that the expert committee members will accept the point that when reviewing rare diseases, it is necessary not only to do it with documents at the desk, but also to listen to the stories of the guardian and the attending physician.]