Every year, Israel’s Committee for the Basket of Health Services reviews a list of new drug therapies for possible addition to the currently available ones. Some of these lifesaving therapies are prohibitively expensive unless provided within this framework.
Professor Ronen Arnon. Photography: Rambam HCC
Patients in need of novel drugs not included in Israel’s basket of health services (basket) can be faced with expenses in the hundreds of thousands of shekels annually. Every year, families dealing with critically ill family members fight to have lifesaving drugs added to the basket. Occasionally, pharmaceutical companies or private insurance providers will temporarily cover the costs of some of these effective treatments on compassionate grounds.
Professor Ronen Arnon, head of the Pediatric Liver, Gastroenterology, and Pediatric Nutrition Institute at Rambam Health Care Campus (Rambam) in Haifa, Israel, is well aware of the problem. One such breakthrough drug is “Bylvay,” (odevixibat), and he has been treating one-year-old Osher with it for the past two months.
Bylvay, is given for a rare and potentially life-threatening, congenital liver disease that affects the transfer of bile salts in the body - progressive familial intrahepatic cholestasis (PFIC). Symptoms appear during the first year of the patient's life, and include severe jaundice, hepatitis, developmental delay, and extreme itching to the point of bleeding – which leads to dysfunction, inability to sleep, and severe impairment of quality of life.
Professor Arnon explains, “PFIC patients and their families suffer terribly. Osher was not responding to existing treatment options, and many times, during phone conversations with his parents – Hanna and Avner, I heard him screaming in the background. It was heartbreaking.”
“This medication has saved our baby’s life and our family’s quality of life; there is no other way to describe it,” says Hanna, explaining the impact Bylvay is having on her son since he began receiving it. “Now, Osher can function; his health indicators have improved, and our lives as parents have been transformed. He no longer suffers physically; he is happy. The drug gives him the freedom to do what one-year-olds should be doing – smile and laugh – I am overjoyed. That’s all I wish for him.”
One year of treatment with Bylvay costs around 400,000 shekels. “The pharmaceutical company is giving us the drug on compassionate grounds, but not forever. I am praying that the medication will be added to the basket so that we can continue to live our lives,” Hannah continues.
Another example of a lifesaving drug is “Vyvgart” (efgartigimod alfa) for patients with myasthenia gravis - a life-threatening autoimmune disease. Vyvgart is an intravenous drug that removes antibodies from the blood, and the annual cost per patient is approximately 750,000 shekels.
Ahead of the annual committee meeting at the end of this month, patients with rare health conditions are fighting to have these and other expensive drugs added to the basket. They speak with one voice, “There is no time to wait; these medications work. We are living proof. Please add them to the basket.”
Israel’s Committee for the Basket of Health Services led by Professor Dina Ben-Yehuda will be reviewing hundreds of new medications and medical technologies totaling around 3.5 billion shekels. Towards the beginning of March, the committee will decide what is “in” and what is “out.”
Professor Arnon, hoping for the inclusion of Bylvay in the health basket, concludes, “Bylvay changed Osher’s situation completely. This medication has been submitted for consideration; its positive effect is clearly evident.”
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