11-year-old Aya needs a drug to avoid the need for lung transplant • The problem: treatment is only given at age 12 • "Aya doesn't have time to wait"

• Aya has no time to wait

The Race for Life in Ayia Altville: Ayia, almost 11, from Beit Hanina, suffering from cystic fibrosis, a potentially fatal lung disease. Aya is in serious condition in Hadassah Mt. Scopus. The treating doctor recommended that you receive a new drug that was only approved a few months ago, because her condition is deteriorating and the drug treatment is the only one that can prevent her arrival at lung transplant.

However, Lia lacks one year of life to be treated with a tricepta drug that was only approved by the FDA last October as a breakthrough treatment. The drug is intended only for children over the age of 12 and is expected to be submitted to the next drug basket. But Aya's sand clock is running out. One application submitted to Clalit General to receive the drug was rejected and the family now appeals to the Clalit Exception Committee.

"Her life in danger"

"Aya doesn't have time to wait until she is 12. It's hard to assess her life expectancy, but it's a race against time. Her lung function is very poor and she's at 50 percent mortality within two years. She lives on a roulette. If she doesn't get the drug or You will undergo a life-threatening transplant, "says Dr. Breuer, an expert in pediatric pulmonary medicine from Hadassah Mount Scopus who treats Aya.

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The cost of the drug is estimated at about $ 300,000 a year (about NIS 1.3 million). An amount that is above the reach of every patient. Aya has been in a worsening condition for 6 years and has been hospitalized since October for further deterioration. Her prospect of undergoing lung transplant abroad is also not without risk. "There is a risk of mortality in the two years after the transplant. And the results of the drug that I need are a miracle," says Dr. Breuer.

General Health Services said: The drug is not registered in Israel and is not in the health basket and the request will be discussed by an exceptional committee. This is not the only appeal for this astronomical drug, although there is no budgetary source for funding it. We are again calling for the establishment of a national committee of exceptions to decide these situations.