Children with epilepsy are drug free, families are helpless

Mesude Irsan

@ Mesudarsan

[email protected]

Children with resistant epilepsy do not have access to anticoagulants. Families and their sick children, who cannot get clobazam, which is supplied by the Turkish Pharmacists Association (TEB) from abroad, or other antiepileptic drugs that should be available in Turkey, are suffering greatly. In addition to the original drug, there is no equivalent.

Photo: A.A.

Not every epilepsy medication is good for every patient, it cannot control seizures. The key is to continue the treatment with the drug that works. Missing even a single dose of epilepsy medication can cause convulsions, which can have serious consequences. Some families try to get drugs abroad through their relatives, truck drivers.

There are two main reasons for the absence of drugs. The first is the pricing policy of the Ministry of Health. Some companies are reluctant to bring drugs to Turkey because the prices are too low. Some companies do not like to produce cheap and low-profit drugs.

There is a black market

Families travel from district to district, province to province looking for medicines in pharmacies. Families who form groups on social media are united. They borrow medicines from each other. Sometimes the remains of dead children become medicine for others. Black marketeers demand 5,000 lira per box per family for clobajam, for example. A few pharmacies that acquire drugs in one way or another may claim exorbitant prices, again exceeding a thousand lira. There are families who buy drugs that are known to be imported from Iran. Drugs that cost more than their budget can be counterfeit.

‘The last box left, when it’s over, I’m done too!’

When I called Maine Dean, the mother of 7-year-old Payraj, who has cerebral palsy, she was looking for a drug containing the active ingredient primidone at a Florida pharmacy.

Payraj, who has resistant epilepsy, was previously given clobajam. However, when he could not get it, Payraj, who was left without medication, had a permanent epilepsy of 1.5 hours. He was treated as an anesthetist in the intensive care unit. The switch from Clobajam to Primidone has been done in a very controlled manner.

Since it was almost impossible for me to reach my strong Clobajam, he had to take this route: “TEB brings Frizium (Clobazam). However, investing money either does not come or is expected too much. Although there are only a few people in hand, they provide drugs in one way or another. But the price is too high. Families buy it out of necessity, but not everyone can afford it. “

Switching to other epilepsy drugs was not enough to solve the problem of pyrexia: “There is no mycelium (primidone) … I go to pharmacies in different districts and ask. I have one last box left. When it’s gone, I’m done! When Poyaraj cannot take the medicine on time, his komatos get convulsed. I told my relatives in Trabzon and they were calling too. Our children are truly victims of it. It’s not the luxury we’re looking for, it’s the medicine! “

Five separate campaigns are underway

Families are trying their best to make their voices heard. Five separate petitions for epilepsy medicine campaign continue on Change.org. One of the initiators of the campaign is Muzein Seechek.

Her two-year-old son, Kuma Ayaz, has a congenital genetic disorder and epilepsy.

CISEC has called on the Ministry of Health and TEB to resolve the issue: “Our children’s diseases are already very difficult. My son has disobedient epilepsy. We were very relaxed with Frisium. We can’t find any medicine at the moment. So far, we’ve found families whose babies have died or who have used the minimum dose and who have had too much. If seizures increase, we have no choice but to stop them. In this case, the only thing that can be done is to sleep through the veins. “

Çiçek says the families who deposited the drug in TEB also failed to deliver the drug. “Every convulsion of my child is going away again and again. Our children are not going far. Convulsions destroy any chance of progress. “ Says

‘No medicine for four or five days, convulsions increase’

Eight-year-old Yesim Yelis uses two other epilepsy drugs in addition to Yacht Clobazam.

According to Ann Arzu Yat, convulsions increase with the reduction of clobajam, one of the complementary drugs: “Convulsions start without taking a single medicine. I don’t have a rest. He has been without medication for four or five days and his seizures have increased a lot. I deposited money in TEB 1.5 months ago, no medicine yet. ‘Wait for Foreigners’ They say we are waiting like this. At this rate, we will be hospitalized again. “

Mention that there are drugs on the black market, but the price is too high to ask, yacht: “They want 5,000 lira for the box, which is a weekly dose. My family lives on a minimum wage. How can I pay? He asked.

Other pediatric epilepsy medications include Sabril (Vigabatrin), Clobium (Clobazam), Lamictal (Lamotrigin), Convulex (Sodium Valpolate).

TEB: There are supply problems around the world

TEB has given us a written answer to this question.

In its response, TEB said that efforts to raise about one-third of the world’s freesium stock produced for patients in Turkey have been successful.

Here is the description: “The problem of supply of freesium, which is imported from abroad and used especially for pediatric epilepsy patients, has been followed by TEB from day one. Interviews and applications have been about experienced issues. The supply problem is not only in our country, but all over the world. Friesium drugs were supplied. Our patients who apply after receiving the medicine from us will be delivered as soon as possible. ”

Adult epilepsy medications also have problems

On the other hand, some drugs may not reach adult epilepsy patients. Medications that adult patients have difficulty finding include oxycarbazepine, Vigabatrin, ACTH Vial, ethosuximide, clonazepam ampoules.

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