"I beg, give my brother Meir a chance - he is only 38 years old and has never seen anything in his life, cared for sick parents and today he is sicker than our father, and I fear the worst of all. He has nothing left to expect, the new drug is his only hope to live More years of living with dignity. "
This is what Maya Bezalel, a resident of Ofakim, wrote to the drug basket committee that is currently discussing a drug for Huntington's patients, a particularly rare and incurable rare genetic disease.
In the next two weeks, the Ministry of Health's drug and technology basket committee is expected to conclude the discussions, and recommend to the government which new drugs will be added to the public drug basket in 2022, with a total budget of NIS 550 million.
Huntington's, one of the most severe genetic diseases, is most commonly detected from the age of 40 and up.
It gradually causes severe brain damage in the patient and leads to extremely severe movement disorders in all parts and organs of the body, psychiatric symptoms, nursing hospitalization and death at a young age.
To date, there is no drug in the world that changes the course of the disease, and that of "nature" is considered essential as a solution to the difficult and central problem caused by the disease.
The new drug treats one of the severe problems caused by the disease, of involuntary movements throughout the body which lead to severe and incurable problems in walking, eating and speaking, and cause fatal exacerbation of the disease and mortality.
Prof. Halevi, Chairman of the Basket Committee,
According to doctors 'and patients' testimonies, Teva's "Austedo" is the only drug in the world for the disease, and treats with great success a significant and consistent reduction in the phenomenon of involuntary movements.
This is the third year that the drug has been nominated for inclusion in the basket, and this year the doctors are finally demanding that the basket committee's injustice towards these unfortunate patients be rectified.
According to doctors' estimates, the estimated cost of the drug in the basket is about NIS 30 million a year - for about 80 patients in Israel who desperately need it, as well as about 250 patients for whom the drug helps in the fight against tardive dyskinesia.
The patients' renewed struggle this year was revealed in November in "Israel Today", and the committee has already rated the drug with a high score.
"Allow me more life"
Tardive dyskinesia is a disease characterized by involuntary muscle movements throughout the body, accompanied by intense pain and a feeling of suffocation, and often also occurs due to very severe side effects of medications.
Haim Mazen, 65, from Jerusalem, who suffers from this disease, wrote to the basket committee that "I have been living in a nightmare for 15 years and suffering from the disease that causes involuntary muscle movements, and every movement is accompanied by intense pain and inhuman suffering. A world will give me, life. "
Maya Bezalel further wrote to the committee: "I am writing on behalf of my brother who can not do this. Our mother fell ill before him, and we nursed her together with our father who suffers from epilepsy and behavioral disorders, until she died in agony. Unfortunately, my brother inherited the disease. "He can do for him, make it easier for him and allow him to regain some of his self-respect."
In his reply to Maya, Prof. Yonatan Halevi, chairman of the drug basket committee, wrote that "we will do our best, with the help of the name, although it is not possible to guarantee in advance.
"The efficacy and safety of the many different drugs served in the basket are at the forefront of our minds, and I wish you good news."
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