Cystic fibrosis patients call on the drug basket committee to approve a drug that may prolong their lives and improve them beyond recognition • Michal Bograd from Bnei Brak: "A miracle worker"
"The drug allows us to think about the future."
Michal (left) and Nehama Bograd
Photography:
Coco
Exposure of a rare and unusual human and medical struggle:
Michal Bograd, mother of five children from Bnei Brak who are all diagnosed with hereditary and fatal lung disease, cystic fibrosis (CF), calls on the Drug Basket Committee to add to the 2021 basket a new and expensive drug for their disease, TRICTA She says: "There is an extraordinary opportunity here to extend the lives of my children and the lives of patients for more than 20 years."
The Ministry of Health's drug basket committee is scheduled to convene early next week for the final marathon of discussions, at the end of which it will be determined which new drugs and technologies will be added to the state public drug basket in 2021.
Cystic fibrosis is a very severe and deadly inherited disease, caused by a damaged protein that causes severe damage to health and the ability to breathe, as well as severe and cumulative damage to other systems in the body, including the pancreas and digestive system.
The drug Tricapta is a groundbreaking and very expensive drug, and its price is currently estimated in the basket at about NIS 700,000 per year per patient.
It is intended for a group of about 115 patients (out of 700 patients in the country with the disease), who until now have not had any other effective treatment, so some died at a young age.
The drug has been approved by the U.S. Food and Drug Administration (FDA) following impressive findings in studies on the drug's success in drastically reducing disease damage and successfully extending patients' lives by decades.
The drug is manufactured by the American pharmaceutical company Vertex, which specializes in drugs for CF, and markets it in the country of Madison.
The patients' struggle was revealed in "Israel Today" starting in August this year.
Michal Bograd told Israel Today that "the new drug gives me hope, it works wonders. My children have a serious illness that affects all body systems, especially the respiratory system. All my children are suitable for the new drug that is being submitted to the basket this year. Currently some of my children are receiving the drug. "The study, and I already see a tremendous simple improvement in lung function. This drug will save all five of my children."
Nehama Bograd, 20, is receiving the drug temporarily as part of a study, with her 18-year-old brother Yehuda.
She said, "Until I got the drug, life revolved only around the disease. I had to get up really early to have time to do inhalation and physiotherapy before school, and I take a lot of pills so I can digest my food. It's not easy. CF is a long and complicated story, and only who "Living it understands what it's about. Now my biggest hope is that the rest of my brothers can get the drug. This drug must go in the basket, there is no other option for us."
Nehama adds that "Since I received the medicine, my life has completely changed. I feel like a completely healthy person. I have no way of explaining how crazy it is. My brother, 18, also responds well to the medicine. Suddenly you can breathe. This medicine allows us Think about the future. "
The Medicines Basket Committee responded: "Tricapta is one of the medicines that will be nominated for the basket in the committee's final discussions that are planned soon (rated a9). This year, about 880 medicines and technologies were submitted to the committee."
