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Parents of children with bone disease against the drug basket committee: "Save agony, surgery and dwarfism" | Israel today

2022-01-15T21:59:42.037Z


The drug "Chrysoita" is supplied to about 40 children suffering from bone softening, a rare genetic disease • The problem: The drug is only funded until the age of 18 • Now the children's parents are starting a struggle: "The children will finish growing, but the disease will not end"


14 pairs of parents of children with rare genetic bone disease have recently started a fight with the drug basket committee, with the aim of introducing an innovative drug for adults as well - and not stopping the funding of the drug when patients reach the age of 18.

The drug Crysvita is intended for the treatment of the rare disease soft tissue (XLH), from which about 40 children and adolescents in the country suffer.

The drug was added to the basket in 2019 after a public and media struggle.

Its annual cost is about NIS 32 million.

Bone rickets cause severe developmental problems in all bones and muscles from an early stage in children's lives.

It can lead to disability and low stature due to extreme delay in body growth, fractures, inflammation and severe bone diseases and very severe and incessant pain in many areas of the body.

The disease causes a great deal of suffering and severe functional problems, forcing patients to undergo both complex and life-threatening orthopedic surgeries on their own.

The drug, given by injection, was developed especially for patients with rickets, and is the only treatment in the world that addresses the causes of the disease.

The drug is considered a breakthrough in the field of rare diseases, as it leads to the correction and prevention of the signs of the disease.

However, it was only included in the basket until the patients' bone growth was completed, which means that the transparent patients have already started stopping treatment after the patients have turned 18, regardless of their medical condition.

Dr. Zeitlin, Photo: Gideon Markowitz

In a letter to the basket committee and the committee's chairman, Prof. Yonatan Halevi, published here for the first time, the parents wrote that their lives had changed beyond recognition, and that their children were suffering less excruciating pain.

Recently, however, we were surprised to find that some HMOs are discontinuing treatment for children who have completed growth, claiming that this condition is included in the basket.

But has the disease ended?

Has the suffering ended?

The answer is no.

We think this decision is immoral, and that it is abusing us and our children.

It causes our lives to go backwards.

What happened to the principle of therapeutic continuity in Israel?

Why is our children's right to a therapeutic threshold so grossly trampled on? "

The parents also wrote that "the basket committee can once again do justice and correct the injustice by putting the drug in the basket for adults as well, so that patients will receive the drug by right and not by grace. "In the quality of life, that if left untreated - they will become disabled adults who constitute a heavy burden on society."

The expansion of coverage for adults is estimated at an additional budget of NIS 13 million per year, intended for about 20 patients.

The basket committee received recommendations from senior physicians, including Dr. Leonid Zeitlin, director of the bone clinic in the pediatric orthopedic department at Ichilov Hospital in Tel Aviv, and Dr. Shelly Levy, a senior physician at the Nephrology Institute at Schneider Pediatric Hospital in Petah Tikva.

No response was received from the basket committee.

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Source: israelhayom

All life articles on 2022-01-15

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