Huntington's patients, a rare and extremely incurable rare genetic disease, are embarking on a new battle this week in the Ministry of Health's drug basket committee to include a new drug basket this year that treats involuntary movements (chorea) - leading to disorder in all areas of life.
According to the testimonies of doctors and patients, the drug "Austedo" from Teva is the only one that exists today, and successfully treats a significant and consistent reduction of these effects.
Osteo is one of the drugs to be discussed today in the Ministry of Health's drug basket committee.
The committee, headed by Prof. Yonatan Halevi, has a budget of NIS 550 million this year to update the drugs and new technologies that will enter the state basket in 2022, and must choose the drugs from hundreds of drugs submitted to the committee at a cost of NIS 3 billion.
The osteo has not been added to the basket in the last two years, and this year patients and doctors are demanding that the injustice be rectified.
According to doctors' estimates, there are about 500 patients in Israel with the rare disease, of which about 50 patients desperately need the new drug at an annual cost estimated at NIS 20 million a year.
The drug Ostedo,
Huntington's disease is one of the most severe genetic diseases.
It is most often detected in the 40s of the patient's life, and it gradually leads to severe brain damage, severe movement disorders in all parts and organs of the body and a decrease in brain and cognitive function - which in turn causes severe psychiatric symptoms, and sometimes even hospitalization and death at a young age.
The disease is especially common in the Karaite community and in the Jews of the Caucasus.
Unfortunately, to this day there is no drug in the world that changes the course of the disease, which is precisely why Teva's drug is considered so essential for patients, as someone who successfully treats the severe and central phenomenon that this disease causes patients.
Idit and her husband Tiran, who is ill with the disease,
To her great sorrow, Idit Hadari from Ma'ale Adumim knows the terrible suffering, torment and loss from this rare and terrible disease: about 8 years ago, her son Idan, then 4 years old, and her husband Tiran, then 40, were diagnosed with hereditary disease.
About two months ago, Idan died of the disease when he was only 12 years old - one of the youngest patients discovered in Israel, and her husband Tiran is already in an advanced state of the disease and is in a nursing condition.
Idit told Israel Today: "I saw Benny Idan suffer from this disease until the last moment of his life, and unfortunately he did not receive the medicine that could help alleviate his suffering. My husband Tiran also suffers from the severe consequences and daily coping with the involuntary movements.
"The disease is getting worse every day, time is running out and the hourglass is running out. I cry out for the cry of my sons, husbands and Huntington's patients who do not receive the medicine. "I call on the basket committee to see the transparent Huntington's patients, and I pray with all my heart that for the patients there will be salvation for the serious illness."
"Waiting for 4 years"
One week ago, Nira Dangor, chairman of the Huntington Association in Israel, wrote to the Drug Basket Committee that this is "the third year that the association has applied to the drug committee, and in the meantime more than 4 years have passed since the drug was approved by the US Food and Drug Administration."
She said, "What has not changed is that only a very small minority of Israeli patients are eligible to receive the drug, those lucky ones who have taken out private health insurance that also includes drugs outside the basket. Now the right to receive the drug fairly and equitably lies with you.
Prof. Tanya Gurevitch, Ichilov Hospital,
"The drug is intended for patients in a difficult and advanced condition, and that the drugs given to them today in the basket are no longer effective or cause serious side effects - so those who are in the most severe distress remain unanswered. This accelerates patients' dysfunction and loss of independence, "Anxiety and depression," she explained.
"Clinical and Scientific Challenge"
The director of the Movement Disorders Unit and the National Huntington Center for Neurology at the Ichilov Municipal Government Hospital in Tel Aviv, Prof. Tanya Gurevitch, wrote to the basket committee this year and once again asked to budget the medicine in the state medicine basket.
Prof. Gurevitch treats most patients with this disease in Israel, and says, "The drug approved in 2017 has a more friendly side effect profile for treating involuntary movements. But unfortunately, in Israel we can not offer it to Huntington's patients because it is not in the drug basket.
The first discussion of the drug basket committee this year, Photo: Gideon Markowitz
"Only patients who have private insurance have purchased it. We have indeed witnessed a good effect. Its effectiveness has been proven in studies, and neurologists in the US have been using it for 4 years and welcome its existence.
"The drug is a promising treatment option for patients, and the treatment can significantly contribute to improving the quality of life and their function, and will even reduce the need for nursing hospitalizations."
Prof. Gurevitch also wrote to the committee: "The disease is a world-class clinical and scientific challenge, and the preparations available to us today are deficient and do not provide a satisfactory solution for patients. The drug in the basket and its accessibility in Israel will improve the treatment of people suffering from this terrible and orphaned disease. "
Funding for the drug is being considered
The Drug Basket Committee stated: "The osteo drug is part of hundreds of drugs and technologies that were asked to be included in the basket of services in 2022. These drugs are up for discussion this year within the public committee to expand the health basket. This year a budget of NIS 550 million Professional and intensive, she should finish her work at the end of the year and submit her recommendations to the Minister of Health and the government for approval. "