The baby has problems and needs related to blood diseases and cancer. Health Sciences University Basaksehir Cam and Sakura City Hospital Pediatric Hematology Oncology Clinic Professor. Dr. Ali Ayesik has made important statements about delays due to tiring procedures related to imported drugs and access to medicines. Here is Professor. Dr. Those issues are highlighted by Ayçiçek’s words:
Children have access to pediatric cancer drugs
“There is an important issue that separates the treatment of pediatric cancer from that of adults. The treatment of children is done 24/7 and continues day and night every day of the year. For this reason, we must have uninterrupted access to medicines without any hindrance. Unfortunately, this has become impossible. When there is a problem with the supply of medicines, we experience serious difficulties in our treatment. Tenders were made in the past. Subsequently, some changes were made in the law and the supply of medicines was started by the ‘State Supply Office’. He also gets it from the factory. Factory ‘I don’t have raw materials, I can’t produce!’ “Medicines do not come and when the warehouses run out, we cannot find medicines to give to the patients,” he said. Even if we do everything we can to find it (environmental warehouse, hospital, pharmacy, etc.), we can fail. Once the medication is over, we wait for it to come, if not, we continue treatment without it. We are helpless in the face of this situation and we are under this pressure all the time. If there is a drug that we can substitute – in the treatment protocol it is called ‘continuing with the change’ – we change the treatment and continue a different treatment. If one of the four medications is missing, we choose to delay treatment, which is the most reasonable way, if there is a possibility of delivery within a week. However, drugs are a very important part of treatment. In cases where they cannot be provided due to non-availability, we are concerned, although we cannot predict with certainty how much this deficit will contribute to future disease recurrence. For example, we had a big problem with Hodgkin’s lymphoma.
It’s not just our problem, it’s the problem of the world.
Doctors, hospitals and the Ministry of Health have nothing to do with this problem. The problem stems from a shortage of raw materials and is not unique to us, but it is experienced as a common problem in the world. For example, a drug called ‘Dakarbazin’ is a basic active ingredient that is widely used in children’s leukemia. In its absence, we use drugs in accordance with Protocol B instead of Protocol A if the patient’s condition is not suitable for change or waiting for a delay. This treatment, which we apply compulsorily, is preferred and applied in the world as ‘hybrid treatment’. That’s not what we want at the moment. In cases where we are desperate, we resort to more robust treatment so that ‘children are not deprived of treatment’. We have been experiencing these issues very seriously during the last December-March period. During this time some of our patients had to wait for medicine at home.
Relatives of the patients are legally concerned
Although we try our best, it is not easy to explain the situation, especially to some patients and their relatives. People just feel that the treatment of their children is incomplete and they feel panic and sadness. The question, ‘Will this delay or lack of medicine cause recurrence of the disease?’ We cannot say, ‘If you do not use this medicine, this disease will recur’, nor can we say, ‘If you use this medicine, this disease will not happen again.’ Although families expect a definite verdict from us on this matter, our elders said: ‘Anyone who says I peeled a raw egg before cooking it is lying’. It is a process full of unknowns for all of us.
Medicine methods are preyed upon from abroad
Heavy methods of importing cancer drugs from abroad also cause delays and complaints. We have noticed this problem especially in medicines containing active ingredient ‘Asparaginus’, which is one of the most important medicines for childhood cancer. The global production of this drug, which should be used 12 times a month, was discontinued about 6 months ago and was withdrawn from the market. It is a drug that we have used in more than half of all patients with childhood cancer. When the drug was withdrawn from the market, we started using a new generation of high-tech drugs instead. The characteristic of this drug is that it is more stable as a molecule and lasts longer in the body. Although some centers have switched to this new generation of drugs, the active ingredient ‘Asparaginus’ is still used worldwide. There was a huge difference in the price of this new generation drug with the drugs withdrawn from the market. However, access to other drugs was very easy and we were satisfied with the results in terms of treatment. At the current exchange rate Asparaginas is about 300 lira, the price of a box of new drugs is 1136 euros One of the new drugs works well with 4 others. With a simple calculation, if we say 1200 lira for four pieces of old medicine, the price of new medicine is around 20 thousand lira. With the determination of the drug exchange rate, the cost of the recipient organization has increased to about 10 thousand lira.
If we have domestic production, then we are not bound by these methods
In addition to these, one of our most important problems is that the procedures required to get new medicines are tedious for us and our families. First, we create patient-specific foreign drug demand with family signatures. It takes half a day, especially when we first start trading. After three months of supply approval, this time we create a report and create a prescription. Later, the family applied for the medicine through e-state Unfortunately, that drug may not arrive within 12 days. However, this drug should be given to a child with cancer who has started treatment exactly 12 days after diagnosis. We are in serious trouble due to late arrival of medicines. So what are we doing? In order to keep our patients from falling prey, we also borrow a unit of the remaining medicine from other patients without wasting it and we give it primarily to our pediatric patients who are waiting for the medicine. When our waiting patient’s medicine arrives, we return what we have borrowed. As can be seen from this example, the problem is not only in the absence of medication. Although there is no problem with the presence of the drug, its supply can be challenging due to the method. However, if we had domestic production, at least we would not be dealing with foreign drug collection methods. “