Following the exposure in "Israel Today" and a legal battle, the Exceptions Committee at Clalit Health Fund, headed by Dr. Nicki Lieberman, decided yesterday to reverse its previous decision and approve funding for an expensive drug that cost about half a million shekels a year for an 18-year-old girl. To remain disabled all her life.
A week ago, the unprecedented struggle of D., an 18-year-old girl from the north of the country, who was suffering from a rare disease, was revealed after the fund refused to fund her the drug that would lead to the right leg surgery, even though the fund has already paid in full That she 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 of the two limbs in the patient's body, but refused to pay the same patient for the same remedy for the treatment of the other limb.
The struggle was waged over the receipt of the drug CRYSVITA for the treatment of rickets, a rare genetic disease that only 34 children in the country suffer from.
The drug, which is given by injection, was added to the drug basket in 2019, on condition that it is given up to the stage where the children's growth plates close.
The disease causes, from an early stage in children's lives, severe developmental problems, deformities and sprains in the legs, fractures, infections, diseases and severe pain in the bones and muscles.
On the recommendation of the doctors, D. is being treated at Dana Children's Hospital at the Ichilov Medical Center in Tel Aviv, where D. successfully underwent the first operation in June 2020 to correct a severe deformity in her left leg that was intended to improve her function. For almost a year, but in the same follow-up surgery to treat the same problem in the left leg, Clalit's exceptions committee refused to fund the drug, although doctors warned that without it "there is a high risk of poor bone recovery, mobility impairment and lifelong disability."
Success depends on the drug
The doctors who treat D., who returned to Clalit with a request to finance the medicine for the right foot, are Dr. Leonid Zeitlin, a senior pediatrician and head of the bone diseases department in the orthopedic department at Dana Children's Hospital, which coordinates the treatment of most rickets in Israel. Prof. Yael Leventhal, Director of the Endocrinology and Diabetes Unit, and Dr. Avivit Brenner, Specialist in Pediatric Endocrinology.
Following the refusal of the Clalit Exceptions Committee for funding, D. filed a lawsuit against Clalit in the Tel Aviv Regional Labor Court, demanding that the drug be funded on the right foot as well. The president of the tribunal, Judge Hadassah Yahalom, decided that the Exceptions Committee would hold a retrial, following which the committee decided yesterday to go back and approve the drug.
Meanwhile, last Thursday, D. underwent surgery on her right leg at Ichilov Hospital.
She is now recovering and she is expected to receive the coveted medicine now.
A bottle of chrysoita, without credit
The complex operation to correct deformity in the femur was successfully performed by the team of surgeons in the Department of Pediatric Orthopedics under the direction of Dr. Dror Ovadia. Of 3D printing and custom instrumentation.
Baruch Lieberman, CEO of the Friends of Medicine Association, said: "Every patient deserves the right to receive the medicine he hopes for, as recommended by the attending physician.
We are proud of our legal team and we are glad that we were given the right to help. "
Clalit Health Fund stated: "The Exceptions Committee discussed the case as we undertook, and in light of all the medical information and the circumstances of the individual case - the request was approved. We wish the patient complete medicine."