Following the exposure in "Israel Hayom":
the Labor Court asked the Leumit Hospital Fund to finance four-year-old Salah Abu Al-Qian, who suffers from a rare genetic disease, a very expensive medicine that is not included in the state medicine basket.
The court's demand was forwarded last week to the fund as part of a compromise proposal submitted by Tel Aviv Labor Court Judge Tomer Silura to representatives of the fund and attorney Yael Friedel, who represents the family on behalf of the "Friends of Medicine" association.
Salah.
The only one not getting the treatment,
As revealed in Israel Hayom, 14 children suffering from a severe and rare genetic disease have been receiving the extremely expensive and only medicine for the disease from the Klalit, Maccabi and National health funds in recent years.
This is while for Salah, a member of Laumimit, the fund now refuses to provide and finance the long-awaited medicine.
"Israel Hayom" exposure, photo: no credit
All 15 children are diagnosed with Duchenne disease.
This is a rare genetic muscular dystrophy disease that causes severe damage to the muscular, respiratory and heart systems and can cause severe disability and even death at a young age.
The requested drug is "Eteplirsen", which is considered one of the most expensive in the health system.
Its cost is between NIS 2 and 4 million per year per patient, according to the patient's weight.
The innovative drug is given by infusion and significantly delays the progression of the disease.
It also improves function and quality of life, prolongs the patient's life and reduces mortality.
"Unlawful discrimination"
The hearing at the court took place following the lawsuit filed by the mother of Salah Abu Alkeyan from Hora in the south of the country against the National Health Insurance Fund and the Ministry of Health.
The claim was submitted to the Regional Labor Court in Tel Aviv by Attorney Friedel.
"Salah is the only child in Israel suitable for treatment and is not accepted by any of the health insurance funds," the lawsuit states, among other things.
"Also, of all the children who are members of the National Health Insurance Fund who are suitable for treatment with the drug, Salah is the only one who does not receive it with its funding. This is clear and improper discrimination, when a general health insurance fund uses its power and authority in bad faith, and illegally, in order to deny the child the only treatment possible to improve, extend and save his life."
National Health Insurance Fund, photo: Yehuda Ben Yathach
Following the lawsuit, a court hearing was held last Tuesday.
Prof. Shlomo Winkler, Head of the Medicine Division and Chairman of the Exceptions Committee at the Leumit Health Insurance Fund, explained the health insurance fund's decision not to finance Salah's drug.
The Exceptions Committee under his chairmanship decided not to approve the financing of the medicine because of the data on the limited and low effectiveness of the medicine, including for the two children of Leumit members who receive it, and because of its unusually high price.
Salah Abu Al Kayan,
Tel Aviv Labor Court, photo: Yossi Zeliger
"Low chance that the medicine will help"
At the hearing, Prof. Winkler was asked by public representative Assi Mizrahi, who sat at the hearing next to the judge, as is customary in labor courts, if it could not be that the medicine would actually benefit Salah's condition.
To this Prof. Winkler replied that the chance that the drug will work in the child is "smaller", because the more severe the disease, the lower the chance that the drug will help.
However, the court was not satisfied with Prof. Winkler's explanations.
On Wednesday, the judge, in an unusual step, asked the fund to accept the compromise proposal according to which it would agree to finance the medicine for the child for six months, after which the effectiveness of the medicine for him would be tested.
Leumit has not yet responded to the court's request.
Yesterday, the fund told "Israel Hayom" that it is "examining the court's request in depth".
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