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Many patients to the medicine basket committee: "Save us from death in agony" | Israel today

2023-01-10T22:01:37.210Z


The patients turned to the committee this week with a last cry for a chance to save their lives, on the eve of submitting its recommendations to the Minister of Health • Gal and David request: "Allow us to live again" • Felix wishes for a cure for his mother, which will allow her "self-respect and independence" • Hayom: the doctors' conference of "Israel Today" "


"I call on the committee to approve 'Eustado', it is the only medicine that can save my mother and change her quality of life, and what is more important - to relieve people whose disease is in its infancy"

- this is what Felix Agronov of Sderot wrote to the basket of medicines committee this week, about the medicine intended to save the Huntington's disease is one of the cruelest, most severe and deadly genetic diseases.

"I hope that my voice will be heard," he wished in his letter, "so that many patients like my mother will receive proper treatment that will allow us to live with more self-respect and independence. This disease has accompanied our family for three generations. My grandmother, my mother's mother, died of the disease. The outbreak of the disease With my mother, I saw in detail, and to my great regret, I see the end. Recently, symptoms of the disease also began in my brother."

"I hope my voice will be heard."

Argonov, photo: Yehuda Peretz

As revealed in "Israel Today", the new drug, and the only one developed in the world for the disease, treats one of the most severe symptoms caused by Huntington's, of involuntary movements throughout the body that cause incurable difficulties in walking, eating and speaking, while fatally worsening the disease into physical and mental suffering And social is particularly difficult and even to death at a young age.

According to the testimonies of doctors and patients, even though Austedo (from "Teva") is very successful in significantly and consistently reducing the involuntary movements, the terrible suffering and the mortality - this is the fourth year that it has been nominated to be included in the basket, and this year they demand that the injustice be finally corrected.

alleviate the disease

The medicine basket is one of the main issues that will be discussed at the "Israel Hayom" Doctor's Day conference that will be held this morning - about the basket's budget, the struggles of the patients, the transparency of the committee and the Ministry of Health, and the difficult ethical decisions of the committee.

In its final discussions, which will be held at the beginning of next week, its final recommendations will be determined which will be submitted to the Minister of Health and the approval of the government.

In preparation for these discussions, this week new applications from patients who are clamoring to put in the basket the medicine that can save their lives were forwarded to the committee and its chairperson, Prof. Dina Ben Yehuda.

One of them is Gal Brand, 34 years old from Hadera, who and his father have Huntington's disease.

"This disease is in our whole family," he wrote to the committee.

"My father's condition has deteriorated significantly, and his symptoms are very severe. My cousin could not cope with the discovery that he was ill, and committed suicide when he was only 24 years old. Ustedo is the only medicine that can alleviate the disease, and I am begging you, members of the committee - put it in the basket and help us live the The life we ​​deserve. Please, allow us to live with dignity."

"The only medicine that can relieve me."

Brand, photo: Shmuel Buchris

The committee was also approached by the mother of a 3-year-old boy from the north who had PFIC, a rare and fatal liver disease, from a group of hereditary diseases that cause severe and lasting damage to the liver from childhood.

Its patients suffer from a severe decline in quality of life, and death at a young age due to cirrhosis and liver failure.

One of its most prominent symptoms is a severe itch in the body, extremely and incessantly, which leads to persistent and very severe injuries to the extent that it is the main reason for liver transplantation in children.

The deadly disease, for which until now there were no cures at all, has a new drug - "BYLVAY", which costs a patient about half a million shekels per year, and it is estimated that there are five patients in Israel today for whom it can bring a very significant improvement in liver function and a drastic decrease in itching.

"My son suffers from wounds in all parts of his body and unbearable itching attacks," wrote the boy's mother, "which disturbs his sleep and causes him restlessness day and night. He also gets sick often because his immune system is weak. I hope with all my heart that they will make it easier for us and the families that one One of their children suffers from the disease, by including the medicine in the basket and saving my son."

Rina Zoevi, CEO of the Nissan Association of Nazareth, which supports these patients, wrote to the Hasel committee: "Look into their eyes, we are the mouth for them and turn to the committee to raise the cry of the children, and ask you to allow them to receive the treatment that will save their lives."

the desire of the heart

As revealed in "Israel Hayom", patients and doctors are waging a persistent struggle against the committee to include in the basket three new drugs for the disease myasthenia gravis, which causes severe neurological damage to the point of muscle weakness that results in severe impairment of breathing, speech and swallowing, and for some patients also severe disability and death, as already Happened to three women in Israel in the last year.

These are the drugs Viogart (VYVGRT), Soliris (SOLIRIS) and Ultomiris (ULTOMIRIS) - which cost NIS 1.4-0.5 million per patient - which help reduce the attacks of the disease and its deterioration to the point of life-threatening, and are intended for the 20 most severe patients in Israel.

David Gal Or from Jerusalem, who wishes to put the medicine for his illness in the basket, wrote to the committee this week that "Due to the illness and the delays in providing appropriate treatment, one of my lungs was irreparably damaged, and I lost my abilities and my professionalism. It is not easy to lose one's passion, one's profession, one's quality of life, and to sit At home waiting for an adequate medical response to the disease.

"Wants to return to a good family life."

Gal Or, photo: Oren Ben Hakon

"Recently, I have been treated with the drug Soliris, which helps me to manage my life, and especially to stop the deterioration of the disease. I am slowly getting back on my feet and walking, and now I am praying that the medicine will go into the basket so that I can continue to live properly, and especially to return to living a good family life. I am appealing to you : Soliris is the only drug that allows me to start living again."

The Medicines Basket Committee stated in response that it "has not yet finished the discussion phase, and the intensive discussions continue even more intensively. The desire and desire of all of us is to include the most technologies for the benefit of the public in Israel."

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Source: israelhayom

All life articles on 2023-01-10

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