The Ministry of Health and the State budget annually in the state medicine basket the four health funds at about NIS 100 million for the expensive medicines for the 140 people diagnosed with
SMA.
The budget funds two drugs included in the basket and introduced after a public struggle, and also includes special agreements with the companies that manufacture them, which pledged to fund the drugs to any number of patients beyond state funding, so there should not be a single patient in Israel not receiving the rare disease.
However, Israel Today has learned that Clalit HMO, the largest HMO in the country, claims in its official documents and protocols that there are about 100 patients (80 of them and another 20 patients at Maccabi HMO) who are diagnosed with the rare disease, and do not receive the medication. .
This is the first time in Israel that such a claim has been made that such a large number of patients do not receive essential medicines funded by the public medicine basket.
SMA is a rare, severe and deadly inherited disease that causes infants (from the age of six months) to develop advanced muscle weakness as a result of neurodegeneration, and patients with motor disabilities and severe disabilities to the point of inability to walk.
The disease has several types, one of which causes mortality until the age of two years.
In recent years, the struggle of the families of SMA patients is one of the most prominent public and media struggles before the Drug Basket Committee, and in 2018, after an unprecedented public struggle, tens of millions of shekels a year entered the basket a successful and groundbreaking drug for the disease (the Spinera drug), which was The first ever developed for the disease.
At the beginning of 2020, the drug ZOLGENSMA, which is considered the most expensive drug in the world and is given once as a genetic cure for infants up to the age of two, entered the basket for the same disease.
Sick?
Face it
However, the case is even more serious because Clalit's claim of 100 patients is one of the main reasons for not funding the drug for a 22-year-old patient, Liron Oded Mariel, who is confined to a wheelchair and needs a new drug out of the basket - RISDIPLAM.
Liron is encouraging.
Not receiving treatment for months,
Liron turned to Clalit to finance the new drug as the existing drug in the basket given by injection into the spine causes it "severe, abnormal and unbearable side effects", especially in light of the fact that she has not received any drug for months, which endangers her and worsens her condition. Clalit received an opinion detailing her condition and the severity of the pain that appears after almost every injection written by the doctors treating Liron at the Dana Children's Hospital, Ichilov Medical Center, Prof. Aviva Fattal-Wolewski, director of the Institute of Pediatric Neurology and Dr. Liora Sagi, SMA Clinic Center.
However, the Clalit Exceptions Committee, headed by Dr. Nicky Lieberman, rejected Liron's request, claiming that if the drug was approved, the approval would require the fund to fund it for those patients who do not receive the drugs in the basket, about 100 in number. About a week ago, a lawsuit was filed against Clalit and the Ministry of Health in the Tel Aviv Regional Labor Court, demanding that the drug be provided to her.
"No defect"
In its response to the court, the fund said that in the fund's medical files, more than 80 patients were discovered in Clalit who can receive the new drug and do not receive the drugs in the basket today, and that "there was no defect in the Exceptions Committee's conduct and decisions."
Last Thursday, a lawsuit was heard before Judge Dafna Hasson-Zacharia, and it was determined that the Exceptions Committee at the box office will hold another hearing next week on the application after it had previously refused to do so.
Following Clalit's unusual allegations, the board of directors of the SMA Israel Families Association warned the management of the Ministry of Health that "the association has an official database of patients in Israel, and after careful examinations we found no information about those 100 patients" discovered "by Clalit and not treated. And we demand that the HMOs act immediately and update the patients on the treatment they deserve, and receive it urgently. "
The patients' board of directors also warned that "an untreated patient can deteriorate at any moment and lose significant physical abilities, including damage to the respiratory muscles and loss of respiratory capacity, to real life risk. If this is incorrect information we demand to stop distributing it and use it to prevent patients from realizing The right in their exceptional situation to receive treatment that is not included in the basket. " The letter was sent to the following senior officials in the Ministry of Health: the director of the medical technology division, Dr. Osnat Luxenburg, the director of the technology evaluation division, Tal Morgenstein, and the vice president of supervision and control of the health funds, Lior Barak.
It should be noted that Clalit's claim that there are 100 patients who do not receive the drugs in the basket was also the main reason why a new drug for the same disease was not included in the 2021 basket, and a senior health ministry official told Israel Today that Clalit's claims are among the most serious However, the Ministry of Health has not examined them in depth so far.
The patients' struggle to add the new drug to the basket was revealed in "Israel Today" in January 2021.
Back to the Exceptions Committee
The Ministry of Health stated in response that "the Ministry of Health is a formal respondent, as the Exceptions Committee is a fund of the Fund and the treatment funding also came out of the Fund's budget.
Clalit said in response: "In a hearing held today, it was decided with the consent of both parties that the case will be discussed in the upcoming Exceptions Committee. The request for an order was also deleted. Not for reasons related to the general decisions. "
