As the government continues to delay ratifying the new budget, hundreds of chronically ill patients may die while waiting for life-saving drugs to be added to the health basket of medications, which cannot be approved until there is a budget.
Even those who will not die in the next few months face a deteriorating quality of life.
That’s the grim situation that healthcare advocates and patients all over Israel described, as they pleaded for help getting the medications that are being held up by bureaucratic obstacles.
“I can’t think about what will happen if the health basket is postponed again,” said Rivka Klein, 34, a mother of two from Betar Illit who has cystic fibrosis. “I’m telling you, my life is at stake.”
She and about 120 other CF patients around Israel are waiting for the medication, Trikafta, which has been welcomed around the world as a so-called “miracle drug.” It has FDA approval and is approved for use in Israel. It both extends patients’ lives for about 20 years and increases their quality of that life by diminishing their symptoms. CF is a progressive genetic, multi-system disease for which there is no cure, that often requires hours of treatments every day and frequent hospitalizations.
While once, nearly everyone with the disease died in childhood or as young adults, the life span without Trikafta is now to about age 40, but with this drug, patients who have the mutation that responds to Trikafta can often live another two decades and sometimes more.
Children and young people given the drug may have nearly normal life spans, a milestone in the treatment of the disease. But the cost is prohibitive if it is not covered by the health funds, about NIS 800,000 per year per patient. It is expected that the drug will be included in the new health basket, but no patients will receive the drug until the budget is in place.
The frustration of these patients is palpable. Shira Zaguri, the CEO of the Cystic Fibrosis Foundation in Israel, said, “One mother of a child with CF said to me, ‘Even if I sell my house, I can only afford it for a month and a half.’”
While the community of those with CF were cheered to learn that it would be approved for the health basket, no one expected the government crisis that has postponed the approval of a budget would last this long. Zaguri said that another mother told her, “It’s as if I could reach out and touch it, but I can’t get it for my daughter.’”
As Klein told her story, her voice broke.
She has received the medication for several months through a donor abroad and her health fund here agreed to supply it to her until December, thinking that it was about to be approved. Now, she doesn’t know how she will manage after the end of the month.
Klein described in detail how the medication has transformed her life. “My daughters have a mother who can function,” she said. “I used to have to go to the hospital every few months for IV antibiotics and lung treatments. I don’t need to now.” She pointed out that the drug usually decreases the need for hospital stays and despite the drug’s cost, it saves on expensive hospital treatments saving money that way.
But it is not only patients with CF who are anxiously awaiting the approval of the health basket. There are thousands of other patients with rare diseases around Israel waiting for medications that can save and/or improve their lives.
Matab Abu Sabih, who lives near Arad, has two children who have Morquio syndrome, a rare metabolic disorder that affects the processing of certain sugar molecules and causes a host of serious medical problems, including spinal and bone conditions. But there is a medication that can slow the progression of the disease, which has already caused his daughter, Eden, to be confined to a wheelchair. He said his health fund, Clalit, does not supply the medication right now, but it will once the health basket is approved.
“It costs about NIS 300,000 a year for this drug,” said Abu Sabih. “I can’t pay for that.” He said he had switched jobs several times until finding one that allows him to take time off when he needs it to take care of his children, including accompanying his daughter to multiple surgeries.
“Nobody knows the mess that our life is,” he said. “I pay taxes and social security. All I’m asking for is a drug for my children. They can’t get it until it’s in the basket.”