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'In Albania, children who can't hear are called stupid, that's what they said to my son'/ The battle to win a free cochlear implant

2024-08-09 13:32:00, Aktualitet Afize Nelaj

'In Albania, children who can't hear are called stupid, that's

Illustrative photo of cochlear implant

Gisel's parents, only when he turned two years old, realized that he had a hearing problem. A visit to the polyclinic in Pogradec, sent them for a more specialized check-up at the ENT service at the Mother Teresa Central Hospital in Tirana. Doctors confirmed their fears. Giseli suffered from Hypoacusia. The labyrinth of administrative and health procedures meant that Giseli did not benefit at the right time, the device guaranteed by the state, which improves his hearing. Only after 7 years from his birth, after an administrative and civil court process, the justice decided that the doctors should provide him with a hearing device, or a cochlear implant. The cochlear implant, or otherwise known as the bionic ear, is a device that can restore hearing to children, which itself is recommended to be placed in them until the age of 4.

In 2012, the acting Minister of Health, Petrit Vasili, stated that the state budget funds were being reviewed to enable free chiropractic intervention for deaf children. Officially this was achieved in October 2020, where for the first time in our country 5 children between the ages of 2 and 7 could benefit from this package with full funding from the state. Based on this promise, Giseli's family, after not finding a solution for 2 years, started a legal battle represented by the Albanian Committee of Helsinki.

Basically, the lawsuit filed was based on a Decision of the Council of Ministers, specifically
that no. 308 (dated 21.05.2014), an act which approves a series of health packages that are financed
by the state.

'In Albania, children who can't hear are called stupid, that's

The free cochlear implant service guarantee is part of this VKM, specifically in its appendix no. 5, where the Albanian state undertakes to cover the entire procedure. The total cost of this service, according to the said decision, reaches the value of 29 million ALL (old) including the cost of the device 27 million ALL (old) plus the surgical intervention in the figures of 2 million ALL (old).

This package is basically the most expensive intervention that our state reimburses. The responsible institutions are the Compulsory Health Care Insurance Fund, the Ministry of Health and Social Protection and the "Mother Teresa" QSUT. In point 6 of this VKM it is stated that the entire procedure from budgeting to consultations and visits that the child must perform before the intervention, are reflected in the National Register of Health Services Packages. This register is administered by the Compulsory Health Care Insurance Fund. In Giseli's case, he was examined for the problem he had, but the Fund had not fulfilled the administrative obligation. So the Fund is responsible for the decision of the consultation, the form that shows that the child urgently needed this intervention and the registration of the minor in the National Register of Packages. On the other hand, the Ministry of Health and "Mother Teresa" QSUT have the obligation to find the cochlear implant and perform the surgical intervention.

'In Albania, children who can't hear are called stupid, that's
Photo of BM's child

Even this time, these institutions did not show their willingness to perform surgical intervention on Giseli.

Just as his parents faced the struggle to restore their child's hearing, other similar cases are evident in our country.

The story of BM's child is one of them, which again proves an exhausting journey in front of white shirts, just like the case of Giseli.

BM is the mother of a child (whose name we are withholding for confidentiality reasons), who says that in the spring of 2021 she went to the pediatrician to understand what was wrong with her newborn son.

"After the birth, as the weeks went by, I realized that the boy did not react to noises. The pediatrician told me to wait six months because in these months children do not react to noises. After six months, we went to the ENT, where the doctor told me that I should come back in a year because according to her the boy could be autistic. Deaf children in hospitals are called 'stupid', that's what they called my son even in my presence. That's why we went to Italy and after visiting there, I learned that the boy could not hear and therefore did not react to noises." - says the child's mother.

In the BM child's history, the pediatrician took the responsibility or legal duty to establish the child's diagnosis.

Point 8 of instruction no. 26, dated 07.11.2014 determines that:

"The patient, after implementing the referral system, goes to the consultation of the relevant service. The medical consultation, consisting of no less than two doctors, makes the decision for the patient to benefit from the package by completing the relevant documents."

'In Albania, children who can't hear are called stupid, that's
Photo of BM's child

So, in short, the child should be followed by at least two doctors.

After learning the truth, the couple's parents became interested in cochlear implant surgery, which doctors had recommended before the boy turned two.

"When we realized that the boy was deaf, I became interested in the cochlear implant. Before the intervention, the boy had to do the magnetic resonance, but the doctor in charge simply told us; 'I don't want to do it to you, I don't care who you are'. After a lot of going back and forth and without any solution, either from the Fund or from the hospital, we went to Germany and performed the intervention there for free." - is pronounced BM

Just like the story we told at the beginning of this article, in this case too what is said in the letter is not applied in practice.

Based on what we have narrated above, we sent you a request for information to the Fund to find out how many children have needed this service in the last four years, how many of them have received this service and how the budget for this package was managed.

For the first question, we are told that FSDKSH does not have and does not administer the list of registered children who needed to receive this package.

"Regarding the question of how many children are registered on the waiting list at QSUT for the performance of the cochlear implant procedure for the years 2020, 2021, 2022, 2023, we inform you that the waiting list for the performance of the cochlear implant procedure is administered from the ENT Service at the 'Mother Teresa' University Hospital Center." - the Fund is expressed in response.

In fact, the law says otherwise, the responsibility does not fall on ORL, but it is the Fund that administers the National Register of Health Packages. From budgeting to consultations and visits that the child must perform before the intervention are reflected in this register.

'In Albania, children who can't hear are called stupid, that's

So the administration of the lists is carried out first by the Fund through the National Registry, then this list is reviewed by the ENT. The latter is charged only with the responsibility for patient visits and examinations.

Regarding the second question, what is the value approved by the Health Care Insurance Fund for performing this procedure from 2020 to 2023, the answer we received was this:

"Regarding the question of the financial value approved by the Compulsory Health Care Insurance Fund for the performance of the cochlear implant procedure for children with hearing problems for the years 2020, 2021, 2022 and 2023, we inform you that hospital services offer packages of health services approved by decision of the Council of Ministers no. 308, dated 21.05.2014, "On the approval of health service packages in the hospital service" as amended, within the approved annual budget."

So the Fund implies that the hospitals are responsible for the administration of the budget. But even this time it goes against the law.

This is because hospitals are solely responsible for the provision and surgical placement of the cochlear implant apparatus, according to EU standards, to the minor.

Payments for hospital service packages, in this case the cochlear implant, are made by the Fund, according to appendix no. 2 of decision no. 26, dated 07.11.2014.

The decision clarifies that a fund not greater than 10% of the annual budget for hospital services is kept by the Fund, to be redistributed to hospitals during the year for service package payments (including cochlear implant).

As for the number of children who have been able to receive this service since 2020 until today, the Fund shares the data, in accordance with the ENT service, through this table, where in total for 5 years they have been able to perform 32 interventions.

'In Albania, children who can't hear are called stupid, that's

"In response to the request for information, prot no. 257/3 of ours dt 18.01.2024, we inform you that in the ENT service, QSUNT does not have a waiting list for implantation," says the ENT service.

'In Albania, children who can't hear are called stupid, that's

The figures show that the number of interventions is very low, if we take into account the fact that in our country for every 1000 births, there are 1 to 2 children who do not hear from the first day they are born. Not counting those who have this problem in the months or years after.

Through these responses from the Fund, the discharge of responsibility by this public authority towards the hospital service is highlighted again.

The two experiences of the above-mentioned families are a fragment of the picture of the Albanian reality, which places the parents of these children at a crossroads with two choices.

To choose the path of BM, which knocked on the doors of hospitals in another country. Or follow the legal path like Giseli's family.

Giseli, not only did not receive the service at the right time, but due to the procrastination over time, the hearing problem increased, and consequently she also had speech problems.

The minor, in cooperation with the legal representatives of the Albanian Committee of Helsinki, was able to win the trial.

Fortunately, the three instances, i.e. the Fund, the Ministry of Health and the "Mother Teresa" QSUT made it possible for the minor to have a cochlear implant.

Also, due to the problems that Giseli showed in speaking, they were fined 6,838,590 ALL (total) for the damage caused.

'In Albania, children who can't hear are called stupid, that's
The court decision on Giseli's case

If it wasn't for the organization that assisted his family in pursuing this case, it is not known if a solution to the child's problem would have been reached.





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