The struggle we covered and accompanied in "Israel Hayom"
The new drug entered the basket at an annual cost of NIS 25 million and is intended for approximately 1,000 patients per year.
It treats one of the most difficult problems caused by the disease which results in the phenomenon of involuntary movements (chorea) throughout the body, which cause severe and incurable problems in walking, eating and speaking.
In addition, it causes extremely severe physical, mental and social suffering and death at a young age.
According to the testimony of doctors and patients, the AUSTEDO medicine, which is given in pills to be swallowed, is the only medicine developed in the world for the disease.
It treats with great success a significant and consistent reduction of the phenomenon of involuntary movements (chorea) and to reduce the terrible suffering and mortality from the disease.
Approved by the Hasel committee, the drug Ustedo (for illustration), photo: none
This year was the fourth time that the drug was nominated for inclusion in the basket.
The request was approved after the patients and doctors demand that the basket committee's injustice against patients who suffer from one of the most severe and cruel genetic diseases that exist be finally corrected.
According to the doctors' estimates, about 80 patients who desperately need the drug and together with about 250 more patients with the additional disease (tardive dyskinesia that causes movement disorders in mental patients who regularly take psychiatric drugs) that the drug helps.
The estimated annual cost of the medicine in Sel is about NIS 30 million per year.
The basket committee already rated the drug highly this year, however due to its high price and the budget allocated for the drug, the patients and doctors feared that it might not be included in the basket again and that their terrible suffering would continue.
After learning about the addition of the drug to the basket, Rita Forman Hadar, whose two sons were diagnosed with the disease, told Israel Hayom that she welcomed the decision: "I am happy and excited that we were able to make the voice of Huntington's patients, who need compassionate understanding and help, heard.
I am happy that the medicine that is supposed to relieve and help severe symptoms of the disease has finally entered the medicine basket.
I want to thank Ran Reznik from Israel Hayom and the press, from the beginning of the struggle to the end, they were by our side with a big heart."
Rita Furman Hadar congratulates the approval of the drug: "I am glad that we were able to make the patients' voices heard (archive), photo: Yossi Zeliger
Rita Forman's struggle to add the medicine to the basket was revealed in Israel Hayom.
Even before the approval, she wrote to all the members of the basket committee about how the introduction of the drug might change her family's life.
"I immigrated to Israel in 1992 with my two sons when they were still 6 and 12 years old. During all these years I always felt that there was something abnormal in their behavior. For them, dealing with life was much more challenging than their friends.
"My youngest son took it very hard," Rita wrote further, "he went into a deep depression from which he has not come out to this day. He is undergoing psychiatric treatment. We are very afraid that my grandchildren will also have the disease and we live under the huge shadow of this disease. Since then When my son was diagnosed, the life of our entire family was turned upside down and destroyed. This is simply not the life I dreamed for and I feel that there are serious consequences for our entire family."
Rita Forman (center), her son Zohar (left) and son A. (archive), photo: Yehoshua Yosef
Other patients and families worked for the approval of the drug before the final decision was made.
A member of the Executive Committee of the Huntington Association, Batia Khodtov, who wrote to the basket committee that "the very small minority of patients who get to receive the medicine are only those lucky enough to have private medical insurance, and from the reports we receive about them, it appears that the medicine has a significant contribution for them. And the medicine makes it possible to save a lot of money more functional independence, reduces the intensity of motor symptoms and contributes to the quality of life of the patient and his family. This is the fourth year that we have applied to the committee and we hope that this year his application will finally bear fruit and the approval of the drug will be a historic step in favor of those dealing with a rare, orphaned and incurable disease."
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