12/11/2023
This investigation sheds light on the absence of an effective infrastructure for the sustainability of cochlear implants provided to children by the Jordanian government, and the lack of market regulations pertaining to maintenance, spare parts and taxation, making the parents of these children feel “trapped” in an inevitable life-long financial commitment, to technological companies.
“We thought it was simply a cochlear implant and hearing aid and we’d be done,” says Rami Alqam, whose daughter Larees, eight years prior, underwent a cochlear implant provided by the country’s public health sector.
Her parents applied for the free procedure after noticing Larees had hearing difficulties.
Her father says: “We were not made aware, neither before the operation nor afterward, of the financial burden that would ensue.”
“I did everything I could for my children, but I now regret the cochlear implants,” says Shaher Al Hulool without hesitation as he describes the ordeal his four children went through.
Shaher has three girls and a boy, all of whom underwent cochlear implants due to severe hearing loss.
Shaher complains about the continuous repair costs for the implants, be it for the batteries, cables, software updates or maintenance. The children are beneficiaries of a public health insurance that covers the cost of the implants. The insurance provides them with batteries but inconsistently, and Shaher says that they are of bad quality and become defective quickly.
A few years ago, Shaher and his wife had to take out a bank loan to cover the maintenance cost of the device of their eldest daughter, Aya.
Now, any maintenance for the device is not possible because its software needs to be updated first, which would cost 5000–7000 JOD, an amount Shaher cannot afford. Eighteen year old Aya is hence deprived of benefitting from her implanted cochlear according to her father.
The problem does not only lie in the lack of spare parts for the external cochlear device, but extends to the unavailability of auditory-verbal therapy services in the governorate of Tafilah where Shaher and his family reside. The family, therefore, decided to move to another governorate, Madaba, hoping to find better auditory-verbal therapy services for the children. Unfortunately, the situation in Madaba was not much better, as these were all paid services provided by institutions in the private health sector and quite unaffordable for a retiree whose salary did not exceed 200 JOD.
Shaher states that the cost for a one hour therapy session is around 25 JOD per child, which means that his whole salary would not even cover the cost for rehabilitation. Eventually, Shaher was forced to enroll his children in a school for the deaf and mute where they would learn sign language.
The Jordan Customs Department states that spare parts for the external cochlear device are subject to a 16% tax, while the tax imposed on the internal cochlear device provided by the donating governmental entities is only 4%.
The cost of cochlear implants are not subject to any regulation by the concerned authorities. For example, in the case of heart stent devices and procedures, Jordan’s Food and Drug Administration determines the importer’s profit rate according to a set of standards and principles.
According to Jordan’s Food and Drug Administration Law no. (41) for the year 2008, the Administration is the entity responsible for issuing licenses for medical supplies in the market, in addition to regulating the use of these supplies and devices.
In response to an inquiry sent by the investigative team, the Administration admitted to the absence of a system that regulates the prices of cochlear implant devices and stated that it was in the process of establishing one.
Ear, Nose, and Throat (ENT) specialist Dr. Firas Al Zo’bi states that children hold an everlasting relationship with their cochlear devices, hence it is important to ensure their sustainability through regular maintenance, software updates, and part replacements.
“Your son cannot hear sounds,” were the words uttered by the doctor who examined Waleed, a year and a half after he underwent a cochlear implant procedure in Prince Hamzah Governmental Hospital nine years ago.
Waleed was born with severe hearing loss which made him eligible for the cochlear implants granted by the Jordanian Ministry of Health.
The doctor’s words changed the life of the seven year old child. When his father went to see the doctor who had performed his son’s implant procedure, the doctor told him, “What do you want me to do? Your son is lucky to have been given a cochlear implant in the first place!”
Dr. Friedner says that surgeons and implant donating entities do not consider what happens with these children after their operations. This is apparent in a statement given by a former director of Prince Hamzah Hospital, the only governmental hospital that carries out these procedures in the public sector, in his reply to a complaint made by parents regarding the recurring malfunction in the cables attached to the cochlear external device, saying that the hospital was responsible for the medical aspect of the implant procedure and had nothing to do with the device’s cables.
Waleed is now 16 years old. He can neither hear nor speak. He has not been able to continue attending school since he has no access to rehabilitation and therapy sessions due to his family’s financial limitations.
Waleed’s Story
Anthropologist Friedner indicates that the cochlear implants are promoted as the best option available to deal with hearing loss, while families of the recipient children find themselves in an unavoidable lifelong financial commitment to the manufacturing tech companies.
Friedner’s research focuses on areas in Asia and in particular, India, where the government has also adopted a program for cochlear implants in underprivileged children.
Friedner noticed that government officials, cochlear manufacturing tech companies, surgeons and health specialists all focus on what they perceive as “the child’s right to hear” without much consideration for measures needed after the operation, especially those pertaining to continued maintenance and infrastructure, as if implants were a “one-time permanent fix” for hearing loss.
Citing one of the families included in her research project, the anthropologist believes that parents feel “trapped” in a no-divorce, marriage-like lifelong commitment with manufacturing tech companies.
According to a data analysis carried out by ARIJ network for another report on children with cochlear implants in Jordan, most families replace the parts of the external cochlear device at their own expense, as shown in a survey of over two hundred children who underwent implant procedures in public hospitals. The report also indicated that around two thirds of those children needed to replace the external cochlear device.
Interview with Dr. Firas Al Zo’bi and Dr. Michele Friedner
The high cost of maintenance and the device’s pricey spare parts drove Sultan Ammari to offer free maintenance services to some types of battery compartments that have a retail price ranging between 230-250 JOD per piece. Ammari knows, first hand, the financial burden caused by the high cost of spare parts, as his dilemma began ten years ago when his own daughter underwent a cochlear implant procedure.
Ammari founded an initiative whose members included a large number of recipient children’s families. He states: “I have no personal motive. My goal is to try and help people as much as I can by reducing the financial burden on these families,” emphasizing that his services are free of charge.
He has used simple tools to repair the battery compartments for 30 children who were deprived of the ability to hear because of a malfunction in these parts. To combat the high cost of replacements, Ammari uploads instructional videos on how these battery compartments can be fixed instead of paying a lot of money for their replacements.
These are all modest attempts to ease the suffering of parents whose children receive donated cochlear implants only to find themselves trapped in an endless cycle of spare part purchases, maintenance, software updates and auditory-verbal therapy sessions.
Fadi Al Quraan, whose two sons received cochlear implants, says: “Some people are forced to keep their children’s devices on a shelf until they can afford to fix them.”