The corona is also coming for the first time to the struggles over the drug basket for 2021 • Cystic fibrosis patients have demanded that Prof. Gamzo promote the approval of an expensive drug: "We are in danger"

• Rebecca Klein and her daughter Miriam. Received the drug and is fully functional

The corona plague is also coming to the forefront of the drug basket struggle. The Association of Patients with Severe Chronic Lung Disease (CF) last Thursday asked the corona commissioner, Prof. Roni Gamzo, to add a new and very expensive drug to the basket that is for them "critical and life-saving". This is due to their high risk of getting corona, getting into a serious condition, and even dying from the disease.

The precedent, first revealed here, was passed on to Prof. Gamzo by the Cystic Fibrosis (CF) Association, which is a very severe and fatal inherited disease that causes severe damage to health and the ability to breathe, as well as damage to the pancreas and digestive system. 

Expect dozens of inquiries

The demand was also forwarded to senior Ministry of Health officials responsible for the Drug Basket Committee and to the Ministry of Health's preparation for the committee: Tal Morgenstein, Director of the Technology Evaluation Division, and Dr. Osnat Luxemburg, Director of Technology and Medical Infrastructure.

Archive photo: Ami Shamir

The drug basket committee that will discuss the new drugs and medical technologies that will enter the 2021 basket has not yet been established, but discussions and preparations at the Ministry of Health have already begun in February this year.

The committee is expected to convene as early as next September and the budget has not yet been set, but senior officials in the health system told Israel Today that the precedent of CF patients to the Corona commissioner and the Ministry of Health is expected to bring dozens more similar associations and doctors' associations. In view of the increased risk of coronary heart disease, such as diabetes, cancer, heart disease, organ transplants, chronic lung disease, kidney disease, diseases that include suppression of the immune system such as AIDS and more.

In a letter from the CF Patients' Association to Prof. Gamzo, they stated that "in recent months the whole world has experienced the fear of dealing with the corona virus, but for cystic fibrosis patients the fear is particularly great as they are a high risk population and any respiratory injury could be fatal for them. "With the return of the economy to a certain routine, the CF patients remained closed in their homes due to the fear for their lives, and in doing so, they and their families were sentenced to weeks and months of social and economic isolation."

In the letter, they raised a number of demands related to their special state of health under the Corona and stressed that “throughout this dark period CF patients finally had a bright spot when patients with the shortest life expectancy received the news that they had a new and groundbreaking drug (Trikafta, "Tricapta) approved in an expedited route by the U.S. Health Authority for patients over the age of 12. The drug dramatically improves lung function, and is expected to prolong patients' lives by up to 35 years!"

However, the heads of the patients' association warned that "the patients' joy was premature, as the medicine is not within their reach and their lives are in daily danger. The medicine was submitted to the health basket and we consider it an important key to protecting patients' lives." The union's leaders, Meirav Meir, Dr. Uri Inbar and Rivki Klein, wrote to Prof. Gamzo - who himself served as chairman of the drug basket committee: "We turn to you as the chairman of the basket committee and as the one who leads the readiness of the various systems to Corona, including the system. Health, with the understanding that the corona will stay with us for the foreseeable future. We call on you to lead a move to include treatments and rights for populations such as CF patients, who are at high risk due to the corona virus. "

NIS 1.3 million per patient

The drug Tricapta is very expensive, and its list price is about NIS 1.3 million per patient per year. The drug is considered groundbreaking and is intended for a group of about 100 patients in the country (out of 700 patients with the disease), who until now have not had any other effective treatment. The drug is manufactured by the American pharmaceutical company Vertex, and is marketed in Israel by Madison.

However, as revealed in February in "Israel Today", about 10 serious patients do not have time to wait until the struggle to put the drug in the basket and they turned to the Exceptions Committee at each fund for admission. The CF Patients' Association also recently contacted the CEOs of the four HMOs - Clalit, Maccabi, Meuhedet and Leumit, and asked them to act to approve the drug in the exceptional committees, especially during this period, when patients are in the greatest risk group for coronavirus, and receiving the drug is critical. goddess".

Israel Today has learned that the exception committees at Clalit, Maccabi and Meuhedet HMOs recently approved the expensive drug for four patients, one of whom is Rebecca Klein, 33, from Beitar Illit, a CF patient who signed the letter to Prof. Gamzo. 

"Amazing improvement in the situation"

Rebecca, married to Arie and they have two daughters, Esti and Miriam, and in the application she submitted to the Exceptions Committee at Meuhedet, it was written in February that she has "an unusual and rapid deterioration in her condition, and there is no effective treatment option for her." Rivka is being treated by Prof. Eitan Kerem, director of the Department of Pediatrics and the Center for Cystic Fibrosis at Hadassah Mount Scopus Hospital, and he wrote to Meuhedet that he recommends giving her the drug that "it saves lives, as soon as possible," noting that patients in his ward have already been treated with this drug. As part of a study "showed an amazing improvement in their condition". 

However, the Exceptions Committee at Meuhedet rejected its request for funding for the drug three times, until about two weeks ago it appealed again, through attorney Gilad Rogel of the Dolev Medical Justice Foundation, who claimed that "all appeals to the committee were arbitrarily and without justification," and that Klein had already Receives the drug for about three months with a donation from the pharmaceutical company "with very impressive results".

Following this, the United Exceptions Committee accepted Adv. Rogel's arguments, decided to fund the drug, noting that following the drug's receipt, Klein's respiratory condition improved dramatically, lung function increased, she did not need antibiotic treatment at all and full functioning function, including sports activities ".

The Ministry of Health did not respond.