Fear among patients with rare diseases Ahead of a crucial hearing tomorrow in the High Court on a petition regarding the financing of medicines for orphan diseases and rare diseases in the supplementary insurance. Patients suffer from diseases such as muscular dystrophy, cystic fibrosis and Mediterranean fever,
The petition was filed in April by the Maccabi HMO regarding the financing of medicines in the supplementary insurance.
Over the years, Maccabi has approached the Ministry of Health to approve a change in the insurance plan and not provide the drugs, while the other funds do not provide these drugs.
If the petition is accepted, new patients who move to Maccabi will not receive orphan diseases in the supplementary insurance.
However, the petition does not address patients who are already receiving the treatment.
Alternatively, Maccabi is asking the Ministry of Health to order other funds to provide the treatments as well.
In 2013, Maccabi promised to provide insured persons with medicines for rare diseases in the supplementary insurance.
These are drugs that are not in the drug basket and can cost hundreds of thousands of shekels.
As a result, the fund's expenditures on drugs for serious diseases jumped 13-fold - from NIS 6 million in 2013 to about NIS 80 million in 2021.
In addition, in the last seven years, Maccabi's expenditure on orphan drugs has increased by 1130%.
According to Maccabi, many patients with serious illnesses moved to it in a way that created an unfair subsidy from the fund for the treatment of patients and budgetary difficulty.
This is when the funds do not receive any funding from the Ministry of Health.
Convening of the Drug Basket Committee, Photo: Gideon Markovich
On the other hand, the hospital organizations noted that once expensive drugs for rare diseases have been approved worldwide, Maccabi wants to back away from its promises.
Prior to the discussion, the chairman of the Coalition for Rare Diseases in Israel, Orly Azuriel, addressed Maccabi and the Ministry of Health. The coverage period of patients is relatively short.
"Most of the time, these drugs go into the basket."
"Promises scattered"
According to Tali Kaplan, CEO of the "Small Steps" association and mother of Ido, a child with Duchenne-Becker disease, "Maccabi policyholders felt safe.
The feeling is that promises were scattered because medicines for rare diseases did not exist, but when the first medicine was approved, the bowl was turned upside down. "
Tali Kaplan and her son Ido, Photo: Orit-Inbal
The Ministry of Health responded that their position had been presented to the court and that the removal of the orphan drugs from the program at Maccabi would not be approved.
Maccabi Health Services stated that "the struggle should be directed to the other funds that do not allow orphan drugs, and to the Ministry of Health, which refrains from providing budgetary assistance to Maccabi. The fund will continue to fund drugs for those who have already begun treatment. In order to put 'orphan drugs' in the basket, the current situation harms all Maccabi members, whose drugs worth tens of millions of shekels are found in their membership fees, and this is what the High Court deals with.
We call on patients' associations to join us and demand that the state find a permanent and equal solution to the issue. "
Meanwhile, Maccabi addressed the Ministry of Health in a letter in which it stated that the other funds could be required to include the treatment of the ISA, and to avoid hearings in the High Court.
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