6-8 percent of the population in Israel suffer from diseases defined as rare diseases, which are difficult to diagnose and the price of their treatment is particularly high.
The Ministry of Health estimates that in Israel there are between 567,000 and 756,000 patients with rare diseases, and on top of that, about 50,000 babies are born with rare diseases every year.
The definition of a rare disease is that its incidence is lower than one patient per 10,000 people.
It is estimated that there are 8,000-6,000 such diseases and that they are often severe, chronic and worsen during life.
Despite this, the Ministry of Health has not defined what a rare disease is, has not determined a list of diseases that are defined as rare, does not keep a record of the number of patients, and does not budget the health funds in a special way for the treatment of patients - even though the cost of treating these diseases is on average about one million shekels per year.
Also, there are more clinics specializing in the treatment of rare diseases in the center of the country than in the periphery.
A report by the Knesset's Information and Research Center, commissioned by MK Yoav Kish, states that the Ministry of Health did not implement the report of the "Apec Committee" from 2014, which recommended defining who is sick with a rare disease and budgeting the drugs for these diseases accordingly.
There is no record of the number of patients (illustration), photo: GettyImages
The Afek Committee believed that disease registration is a key means of calculating disease prevalence rates in the population, and that there is also a need to monitor the course of the disease.
The committee recommended establishing a "registry for rare diseases" in the Ministry of Health, and the ministry even approved and financed the establishment of a registry for rare diseases in 2015, but to this day there is no body that registers and collects data.
Another recommendation of the Afek Committee is to draw up a list of diseases that require reporting.
The Ministry of Health stated that they use such an international list.
However, some of the health funds believe that it is necessary to examine its suitability for Israel.
"Without planning or a deliberate hand"
In Israel there are four centers for the treatment of patients with rare diseases and 16 clinics.
The Afek Committee determined that "these clinics were established without any prior planning or a deliberate hand. There is no connection between the geographic location of the clinics and the concentrations of patients in the context of their place of residence. There is no planning and no opening of clinics based on a need arising from the field."
The committee also pointed out the lack of allocation of funding sources for the operation of the clinics, and noted that some of the clinics are supported by external parties.
MK Kish commissioned the report, photo: Oren Ben Hakon
Another major challenge in the treatment of rare diseases concerns the accessibility of drug treatment, due to its very high cost to the patient.
It is necessary that these treatments enter the public medicine basket.
The data from the Ministry of Health shows that in the years 1999-2022, 109 medicines and technologies for the treatment of rare diseases were introduced into the basket of health services for about 3,900 people at a total cost of about 655 million shekels.
The Ministry of Health does not have an estimate regarding the annual cost of treating a patient with a rare disease.
Maccabi and Laumit stated that the cost of treating a patient with a rare disease is approximately one million shekels per year.
Despite the enormous cost of treating these patients, the budget for the health insurance funds for an insured person with a rare disease is no different from the budgeting provided for each insured person.
In order to encourage the funds to perform a quick diagnosis for patients with rare diseases and receive financial compensation for this, the Afek Committee recommended giving a higher budget to the health funds for these patients.
Ministry of Health.
There is no estimate regarding the cost of the treatment, photo: Oren Ben Hakon
Orli Dror-Azuriel, chairman of the Coalition for Rare Diseases in Israel: "Eight years have passed since the publication of the committee's report until today, and despite this, the state continues to ignore the people who need its help, and to drag its feet in the treatment of patients with rare diseases. We call on the next Minister of Health to step in In his office's work plan, the completion of promoting the committee's recommendations."
The Ministry of Health stated: "In recent years, the Ministry has recognized clinics for the treatment of rare diseases in Afula and Be'er Sheva, alongside clinics that respond to a specific rare disease. As part of the conclusions of the German Committee, the Ministry of Health budgeted for the registry for rare diseases to monitor its scope, but its establishment depends on the approval of the Ministry of Justice, so that diseases Rarities will be added to the regulations."
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