Heart patients in the risk group demand from the Minister of Health: Put a groundbreaking drug in the basket • They also warned: "The drug will prolong our lives and prevent serious complications of corona"
Exposure: The
corona plague is at the heart of the struggles and discussions about adding new drugs to the health basket.
This time it is a new requirement of the association of patients suffering from a rare and fatal heart disease (cardiac amyloidosis), who are, in heart condition in a serious condition, in a risk group for getting sick and dying from coronary heart disease.
Now they are struggling to put a new and expensive drug in the drug basket (Windmax drug, and its generic name is Tapemidis) which is currently the only treatment that is suitable for their fatal disease.
Photo: Hadassah spokeswoman
The Drug Basket Committee, headed by Prof. Shuki Shemer, convened yesterday for the first zoom meeting of the committee, and another 18 discussions were scheduled for mid-January 2021. 900 drugs and technologies were submitted to the committee this year with a total cost of NIS 3 billion. The budget for updating the basket has been published.
Senior officials in the health system estimate that the budget this year will be about NIS 500 million, similar to previous years.
The great fear of the corona
In August this year, the Corona's first entry into the drug basket struggles was revealed following a request by the heads of the Association of Severe Chronic Lung Disease (CF) to the Corona Commissioner Prof. Roni Gamzo and the Ministry of Health.
The union leaders demanded that they be taken into account and put a groundbreaking and very expensive drug in the basket (Tricapta drug) which is "critical and life-saving for them also because of their high risk of getting corona and their increased risk of being seriously ill and dying of the disease."
Now the heads of the Lethal Heart Disease Association, Danny Dreamer and Sarah Sherwood Zitlani, have also approached Health Minister Yuli Edelstein, saying it is a "rare disease that causes heart muscle damage and leads to severe heart failure and even death. The average life expectancy of its patients is about "Only 3.5 years since the diagnosis of the disease. Until now, there has been no treatment for these patients, until a year ago, the first and only drug of its kind for the treatment of the disease was approved, without which the patients would die from their disease."
However, members of the association noted that "this year, patients are facing not only their serious and life-threatening illness but also great and unique concerns about coronary heart disease. Because they are heart-sick, they are at increased risk for coronary complications and death. Coronary heart disease has been severely socially isolated for months "And they are even afraid to receive medical treatment, in addition to the heavy fears for their lives that result from their illness."
Top priority
The association also wrote that "the new and only treatment for the disease that has not yet been approved in the drug basket, will save lives twice: it will treat their disease and prolong their lives and also prevent complications of corona disease if they get it. We want to prioritize serious patients like this disease. "Their lives are already feared because of the corona plague."
Cardiac amyloidosis is caused by an instability of a protein that breaks down in the heart muscle and causes heart failure.
The Windmax drug from the American pharmaceutical company Pfizer, one of the largest pharma companies in the world, is the only drug for the rare disease (orphan disease) in that it manages to prevent the breakdown of the protein and leads to a significant improvement in function and prolong life in patients.
According to estimates by the Cardiology Association in Israel, the drug is intended for the first two years for 230 patients, at a cost of NIS 47 million (about NIS 230,000 per patient per year) and according to doctors' estimates, the price may decrease in accordance with special agreements between the Ministry of Health and the pharmaceutical company.
About a year ago, serious allegations were made in Israel and around the world against Pfizer for setting a very excessive price for the drug, as revealed in January this year in "Israel Today."
The drug was also discussed a year ago in the drug basket committee and received a high rating (A9) for its importance to patients, but did not enter the basket then because of its exceptional cost.
Prof. Kobi George, director of the cardiac system at Kaplan Hospital in Rehovot, has already treated three patients with the new drug and told Israel Today that "it is a deadly and terminal disease that causes heart failure, which is the leading cause of death and hospitalizations over the age of 65.
"Feeling abandoned"
The drug changes the disease itself and this is a new thing in the field of cardiology.
It is the only effective drug to prolong life and improve quality of life, and if it does not enter the basket, then it means, unfortunately, the death of patients. "
The drug was ranked first in importance for inclusion in the drug basket by the Cardiology Association of the Medical Association and the National Council for the Prevention and Treatment of Cardiovascular Diseases in the Ministry of Health.
One of the patients now struggling to get the drug into the basket is Giora Gutman, 72, from Ramat Gan, who has been suffering from worsening shortness of breath and numbness in his hands and feet for years, but the rare disease was diagnosed in recent months after being hospitalized at the Ichilov Municipal Hospital in Tel Aviv.
Guttman says that after he was diagnosed with the disease he suffered another severe event of chest tightness and shortness of breath and then the doctors recommended him the drug Windmex, but "then I understood the meaning of the disease and the meaning of a single drug that can help me but can not be obtained. I feel the state has abandoned "Patients are like me, because most of us do not have the money to pay for the only medicine that can help. In the meantime, I am still active and feeling fine, but the doctors let me understand that the end of this disease is not good."
The drug helps
The drug, which is taken in capsules for swallowing, has already achieved very good results in studies and treatment of about 40 Israeli patients who received the drug as part of a "compassionate treatment" donated by the pharmaceutical company.
The family of one of the patients recently wrote to the Ministry of Health, as part of a special procedure opened just a year ago where patients and their families can report to the Ministry of Health their experience or request for new drugs to basket: "Before treatment she suffered severe disability and shortness of breath in every effort, including speech, fatigue And severe anxiety. Her condition was poor and only getting worse, whereas since treatment with the drug began in May 2019 the shortness of breath decreased and disappeared, she is completely independent including driving, and does not need help with daily functioning. She has constant improvement and benefit, after all conventional heart failure treatments have failed ".