A very unusual case of outraged injustice and blatant discrimination between children:
14 children suffering from a fatal and rare genetic disease have been receiving the only and especially expensive medicine for the disease from the Klalit, Maccabi and National health funds in recent years.
For only one additional 4-year-old child, a member of Leumit, the fund refuses to provide and finance the long-awaited medicine.
All 15 children are diagnosed with Duchenne's disease, which is a rare muscular dystrophy that causes severe damage to the muscular, respiratory and heart systems, and can cause disability and even death at a young age.
The requested drug is the drug "ETEPLIRSEN" (ETEPLIRSEN) of the American company Sarpeta.
This medicine is considered one of the most expensive in the health system and its cost is 4-2 million shekels per year per patient, according to the patient's body weight.
The innovative drug is given by infusion and results in a very significant delay in the progression of the disease, improves function and quality of life, prolongs life and reduces mortality.
"Israel Hayom" exposure, photo: no credit
The affair, which was revealed for the first time in Israel Hayom, appears in a lawsuit filed a week ago by the mother of 4-year-old Salah Abu Al-Qian, a resident of the local council of Hora in the south, 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 Yael Friedel from the "Friends of Medicine" association, which assists patients in obtaining medication and in the struggles to obtain medication with the HMOs, the Ministry of Health and the insurance companies.
The requested medicine is not included in the state medicine basket, after the basket committee has already discussed five times the request to include the medicine in the basket, but it was not included in the basket mainly because of its high price.
This year it was resubmitted in preparation for the discussions for the 2023 basket.
However, following legal and public struggles revealed in Israel Hayom, the expensive drug that is not included in the basket has been given in practice to 14 children in Israel in recent years: eight as part of a decision by the Exceptions Committee of the General Medical Insurance Fund, four as part of the supplementary insurance of the Maccabi Medical Insurance Fund and two children It is already accepted as part of the Exceptions Committee of the Leumit KPF.
"His condition is getting worse"
The claim was submitted to the court due to the fact that the Leumit HMO did not bother to respond for three months to the family's request to receive the medicine as part of the Exceptions Committee at the HMO which discusses funding requests for medicines that are not included in the basket.
This, despite the fact that, according to the lawsuit, "there is urgency and utmost importance to start the treatment as soon as possible and immediately, because his condition is deteriorating with each passing day and his damages are irreversible, and despite repeated appeals to the committee at the cash register".
The referral to the Exceptions Committee is based on the recommendation of the doctor treating the child, Dr. Sharon Aharoni, from the "Schneider" hospital in Petah Tikva.
Attorney Friedel: "National Health Insurance Fund uses its power and authority in bad faith, and illegally, in order to deny the child treatment"
According to the lawsuit, this is an "extreme and unreasonable delay by the Exceptions Committee, and this when every day that passes without receiving medicine irreversibly deteriorates Salah's condition, when the period is essential for improving, prolonging and saving his life."
"Salah has no other medicinal alternative and the medicine is the only one suitable for his condition. The lack of treatment condemned him to a life of suffering, torment, disability, complete dependence on others and death at a young age.
"Salah is the only child in Israel who is suitable for treatment and does not receive it, and that even among all the children who are members of the National Health Insurance Fund who are suitable for treatment with the medicine, Salah is the only one who does not receive it with its funding and this is clear and improper discrimination.
"KofH Leumit uses its power and authority in bad faith, and illegally, in order to deny the child the only treatment that might improve, prolong and save his life."
Leumit's Exceptions Committee: "It is true that this is one of the only drugs to treat Duchenne, but the degree of effectiveness of the drug, if any, is questionable"
It is further claimed that until now "the committee has chosen to ignore Salah's difficult and deteriorating condition and the unequivocal therapeutic interest that exists in relation to his request and has not given a decision for three months. The committee did not take into account that in its refusal it is actually passing the child's sentence."
"There is no doubt that the treatment will immeasurably improve his condition and quality of life and save his life.
"It is not possible that the Exceptions Committee of the fund will simply ignore this fact and will leave the child without any treatment and remedy for his illness in a way that will, for sure, cause him irreversible damage."
An affidavit of the child's mother, Mania Abu Alkeyan, was attached to the lawsuit.
Following the petition, Leumi last Thursday forwarded the decision of the Exceptions Committee to Attorney Friedel, more than three months after the child's mother applied.
This is because of the experience of the health insurance company with two patients with the same disease who are already receiving the drug, because of the data on the limited effectiveness of the drug and "its unusually high price, which in a few years will reach many millions of shekels and the additional patients will be added automatically over the years."
"unprecedented care"
In the decision of Leumit's Exceptions Committee, there is also a detail of claims made in the US regarding the special approval given in 2016 by the American Food and Drug Administration (FDA) for the drug, a reference to the fact that the European Medicines Agency has so far decided not to approve the drug, as well as a reference to the fact that according to the information As for the coffers, the medicine did not help the two patients in Laomit who are already receiving the medicine.
The Exceptions Committee further determined that "this is a very expensive treatment that has no precedent in Israeli medicine in general, when the cost of the medicine is about one million shekels per year per child.
"It is true that this is one of the only drugs intended for the treatment of Duchenne disease, but the degree of effectiveness of the drug, if any, is questionable. The committee believes that in the absence of funding from the basket sources, the fund cannot or should not approve the treatment of the child with such amounts, and it is important to note that there is difficulty in stopping treatment I took medication after it started even if its effectiveness was not proven, and this is both because of the pressure from the families and because of the treatment team's statement that 'there is no other alternative.'"
The committee's decision is signed by Prof. Shlomo Winker, head of the medical division at the fund and chairman of the committee, Dr. Amir Frydenberg, Dr. Doron Dushintsky, Dr. Dina Saban and attorney Yemima Mazuz, the legal advisor of the Leumit health fund.
Malaumit said in response:
"We wish Salah good health and healing and our professional medical answer will be delivered to the court, as is customary."
were we wrong
We will fix it!
If you found an error in the article, we would appreciate it if you shared it with us
