The patients cry out: "If the medicine does not go into the basket, the children will die" | Israel today

In a last-ditch effort towards the last day of the drug basket committee deliberations, the patients with the rare liver disease Pifik (PFIC) are calling for the medicine for the disease to be included in the basket.

According to them, if this is not done, the patients will not be able to survive.

"In the last few months, we have fought a lot for children with peptic ulcer disease, who fight every day to survive this rare and very difficult liver disease," Rina Zoevi, CEO of the "Nissan" association, which supports Arab liver patients, tells Israel Hayom. "This is the time. to make the decision that could save their lives.

If the drug does not enter the basket this year, patients may die."

The CEO of "Hatz" - the central association for the support of liver patients, Julio Burman, said: "This is the most recent line of the discussions of the basket committee, and we all hope that the patients will receive the answer they deserve."

"can't wait"

As revealed in "Israel Hayom", the rare and hereditary disease causes serious and continuous damage to the liver from childhood, and the patients suffer from a sharp decrease in the quality of life.

One of the prominent symptoms of the disease is an extremely severe and incessant internal itching of the body, which leads to injuries, and sometimes this is a reason in itself for liver transplantation in children.

Until recently, there were no drugs at all for the fatal disease, but now the new drug Bylvay is being marketed, which costs about NIS 350,000 per year per patient.

It is estimated that four new patients need it every year in Israel.

According to studies, the breakthrough medicine, given in pills, succeeds in bringing about a significant improvement in liver function and a drastic decrease in itching.

The drug has already been included in the drug basket in most European countries.

One of the patients, 22-year-old Nathaniel Rodel from Jerusalem, who was diagnosed with Brick's disease, which is part of the group of febrile diseases, has been receiving the long-awaited drug for a year and a half as part of the pharmaceutical company's "compassionate treatment".

According to his testimony, since he started receiving the medicine there has been a dramatic positive change in his ability to function.

Nathaniel arrived yesterday morning at the medicine basket committee hearings at Sheba Hospital in Tel Hashomer carrying a sign with a personal appeal to the chair of the basket committee, Prof. Dina Ben Yehuda: "The patients need treatment and cannot wait."

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