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The Druze's cry to the drug basket committee: "Save our children's lives" | Israel today

2022-01-08T21:50:43.729Z


The head of the community in a rare appeal to the committee: "Approve putting a medicine in the basket for a terminal illness that claimed a life" • Senior doctors also recommended putting the medicine in the basket • The cost of the medicine: NIS 2 million per patient per year


The spiritual head of the Druze community and chairman of the Supreme Druze Religious Council, Sheikh Mawafek Tarif, addressed the chairman of the drug basket committee, Prof. Yonatan Halevi, and the committee members and asked to put in the basket a cure for a deadly genetic disease that mainly affects Druze and Arabs.

The appeal, first revealed here, is very unusual in the history of the Basket Committee.

The committee is expected to conclude its deliberations in the next two weeks.

Sheikh Mawafek Triff, Photo: Michelle Dot Com

Primary hyperoxyluria is a rare genetic disease, and is known in the country to about 20 patients who have suffered from it.

The disease leads to terminal kidney failure, irreversible damage to all organs of the body and death at a young age.

Patients need frequent dialysis treatments and liver and kidney transplants, and some also die from transplant complications.

In Israel, the incidence of the disease is considered relatively high compared to Europe and the United States. The disease is particularly common in some Muslim and Druze villages in the north of the country.

The drug that is currently being fought is Oxlumo, which manages to neutralize the cause of the disease and greatly improve the condition of patients with few side effects.

The cost of adding the drug to the basket is estimated at about two million shekels a year per patient.

One of the patients diagnosed with the disease is 10-month-old Hana Saleh Ali, from the Druze village of Kasra in the Galilee.

Hana's brother died at the age of 3.5 from the same disease.

Hana has been receiving the expensive medicine for the past six months as part of a study, and according to her father, Nahil Saleh Ali, "until she started receiving the medicine she deteriorated and we feared the worst. From the moment she started receiving the medicine the disease stopped - she eats, plays, grows "We lost ours. In order for my child and other patients to receive the medicine, she must enter the basket."

"The disease has been halted."

Nahil Salah Ali and his beautiful daughter, Photo: Eyal Margolin / Ginny

In a letter to the chairman of the drug basket committee, Sheikh Mawafek Truff wrote: "The proverb 'Every one who saves one soul as if he saved a world and its fullness' takes on double meaning in the face of the loss the family experienced."

The basket committee was given unequivocal recommendations by senior doctors in the field, calling on it to put the medicine in the basket.

The basket committee did not respond to a request from the head of the Druze community.

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Source: israelhayom

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