Leukaemia Care Under Fire in Azerbaijan

Parents of children suffering from leukaemia in Azerbaijan say they are forced to pay for medicine themselves, despite government promises to cover all the costs of cancer treatment.

One mother, who asked not to be named in case speaking out caused trouble for her 14-year-old son, said she spent 600 manats, about 750 US dollars, on medicine when he underwent nine days of treatment for leukaemia at the Institute of Haematology and Transfusion.

“What can I do? How should I act? I’ve already sold all valuable items from the house. I don’t have anything left to sell,” she said. “I just don’t know how I’ll find money for more treatment for my child.”

Some 160 children with leukaemia, a form of cancer of the blood, are currently registered at the haematology institute. Activists supporting their parents say the state funds assigned for medicines are not reaching them.

“When you talk to the parents, it just breaks your heart,” Mehriban Bagirova, head of the Civil Union for Combating Leukaemia, said. “They almost never receive free medicines, so they’re forced to buy them themselves. And this is an expensive course of treatment.”

Her words were confirmed by every parent interviewed by IWPR.

According to Gunay Aliyeva, from the town of Shamkir, “The treatment of my four-year-old son depends on one medicine which is very expensive. You can only find it at three pharmacies, each of which sells the same medicine at a different price, so the cost varies between 50 and 70 manats. Considering that my son needs this medicine every week, it works out at a cost we can’t afford.”

Government officials say cancer treatment is fully funded, with 14 million manats earmarked for it from the budget in 2011 and 11 million the year before.

“Cancer treatment is paid for by the state,” a health ministry said. “Funds are allocated for this from the budget ever year. If a doctor or some official demands money from patients, then they should make a complaint to the ministry. Any such complaint will be investigated,” he said.

Asked how many complaints the ministry had actually received, the spokesman said it was “not many”.

Until 2009, children with leukaemia received treatment at the Azerbaijan’s Children’s Clinical Hospital No. 1, but it has been closed for repairs. The young patients were then moved to the haematology institute. Space there is limited, and staff acknowledge that conditions are not ideal.

“Because places are limited, we have to keep leukaemia sufferers together with other patients, and this is harmful to their health, since any infection can worsen their condition,” Gulnara Hajiyeva, a senior doctor at the institute, said. “There are just three wards with nine beds. There’s no water supply inside the wards, and they are very dark and too small, and consequently poorly ventilated.”

Mir Eldar Babayev, a senior researcher at the institute, agreed that the institute needed a separate wing for oncological haematology.

Solmaz Azizova, head of the Association for Invalids’ Problems, said Azerbaijan lacked the capacity to conduct bone marrow transplants, a key way of treating leukaemia.

She said that instead of attempting to set up a transplantation service, medical staff preferred to compete for a share of the money assigned for cancer medicine.

“Our association runs a project to help the families of children with leukaemia. We collect money, buy medicines and distribute them. But we can only do this when the children are at home. When they’re in hospital, under doctors’ supervision, we don’t have a right to interfere,” she said.

Nevertheless, Azizova said, things were improving.

“The year before last, we lost 42 ill children in our care, whereas last year we lost just six out of 68,” she said. “We very much hope that with increased resources, we will be able to assist all the children who need our help, and not lose another one.”

Aytan Farhadova is a reporter for the website www.var.az in Azerbaijan.