D., an 18-year-old girl from the north of the country, who is ill with a rare disease, is waging an unprecedented fight against Clalit Health Fund.
The reason: the fund refuses to fund an expensive drug for the girl, which will lead to the success of the surgery that will be performed tomorrow on her right leg.
This is after Clalit had already paid in full for the same drug, which is included in the state drug basket, when the girl underwent surgery on her left leg about a year ago.
This is a very rare case, where the fund has already paid in full for a remedy for one or two organs in the patient's body, and refuses to pay that patient for the same remedy for the other organ, where exactly the same problem and vital medical need for the remedy have been discovered.
It should be noted that the doctors treating the girl warn that without the medicine she may remain disabled for the rest of her life.
The treatment requested is the drug CRYSVITA for the treatment of osteoporosis, a rare genetic disease that only 34 children in the country suffer from.
The cost of the medicine given by injection is about half a million shekels a year per patient, and it was included in the state medicine basket on the condition that it be given until the stage when the children's growth plates close.
The struggle of the children's parents to add the drug to the basket was revealed in October 2019 in "Israel Today", and this year a request was submitted to the basket committee to extend the funding of the drug to adults as well.
Osteoporosis is a rare and very severe hereditary-genetic disease in children that, until the drug was found, had no cure in the world.
The disease causes from early stage in children's lives severe developmental problems in all bones and muscles in the body and causes severe symptoms to the point of disability, including low stature due to extreme delay in body growth, deformities and sprains in the legs, as well as fractures, infections and severe bone and muscle pain.
The disease causes a great deal of suffering and severe functional problems and forces patients to undergo many complex and life-threatening orthopedic surgeries on their own.
On the recommendation of the doctors, D. is being treated at Dana Children's Hospital at Ichilov Medical Center in Tel Aviv.
In June 2020 she successfully underwent the first surgery to correct severe deformity in her left leg, designed to improve her functioning.
According to the doctors, the surgery was also successful thanks to the drug treatment with a transparent drug that patients paid for for almost a year.
However, in the same follow-up surgery to treat the same problem in the right leg (which is due tomorrow) Clalit refuses to fund the drug, and doctors warn that without the drug "there is a high risk of poor bone recovery, mobility impairment and lifelong disability."
The doctors who treat Dedema at Dana Children's Hospital, who have returned to Clalit to fund the drug for the right foot, are Dr. Leonid Zeitlin, a senior pediatrician and head of the bone diseases department at the Orthopedic Department at Dana Children's Hospital, which coordinates the treatment of most patients. Softening in Israel; Prof. Yael Leventhal, Director of the Endocrinology and Diabetes Unit; and Dr. Avivit Brenner, Pediatric Endocrinology Specialist.
"Experiencing insults and humiliations"
Following the refusal of Clalit's Exceptions Committee to approve the financing of the drug, D. petitioned against Clalit to the Tel Aviv Regional Labor Court demanding that it also fund the drug for her right leg surgery, which she will undergo tomorrow.
D. is represented by attorneys Yonatan Miller and Yael Friedel, and the lawsuit alleges, among other things, against the fund that the operation on the right leg is in fact the second stage of the same operation that began on the left leg, and that "the absurd result of not administering the drug "On the left leg, he succeeded, with the help of the treatment approved by the fund, while the exact same surgery on the other leg will fail due to the non-approval of the same drug."
Dr. Zeitlin, Gideon Markovich
The lawsuit further alleges that "the disease causes significant physical deformity, suffering and coping most severely throughout her life. She experiences daily insults, humiliations and heartache, and the surgery is designed to improve the other limb so she can walk as one person."
A letter written by D. to Clalit states that "the surgery to straighten my left leg was successful and I am a candidate for surgery on my right leg, which will finally allow me to feel like everyone else after years. I have a way to finance the injection, my dear parents do their best to provide for us with dignity, but to finance the cost of the injection is beyond our ability. "
On Monday, a lawsuit was heard before the president of the Tel Aviv Labor Court, Judge Hadassah Yahalom, and in the hearing Dr. Zeitlin testified that D. Zeitlin further noted to the tribunal's question that "it is impossible to postpone the surgery," and the tribunal ruled, with the consent of the parties, that next Monday the Exceptions Committee will hold a retrial on the application.
In Clalit's response to the court, she noted that the Exceptions Committee tried to get approval from Clalit's supplemental insurance to finance the drug for D.
However, Israel Today has learned that compared to the refusal of Clalit's supplementary insurance, close to 20 patients suffering from the same rickets disease receive funding for the same drug as part of the supplementary insurance of the competing HMO Maccabi, since Maccabi's supplementary insurance funds drugs for rare orphan diseases. .
"Does not meet labels"
Clalit stated: "This is an orphan disease drug that is included in the public health basket only for children from one year of age until the growth plates are closed. The drug is given for about two years, during which it underwent the first surgery. "Also in the indications of the public basket. In a hearing held in the regional court, no temporary order was issued and it was decided that the case will be discussed again in the Exceptions Committee."
