The chemotherapy unit at the Center for Children’s Oncohaematology is on the second floor of the national Okhmatdyt Hospital in Kyiv.
There is nothing modern here. The modest hall is decorated with art made by children who are no longer alive.
Children with lethal diseases from all over Ukraine come here for treatment. The telephone numbers of various volunteer, donor and religious organizations are pasted on the walls.
On April 16, my little niece Sonia Sitkina arrived here. She had been a healthy toddler until a lymph node suddenly appeared on her neck. She ended up in intensive chemotherapy in Okhmatdyt, diagnosed with a rare form of acute myeloid leukemia. By Sept. 18, just a few days before her fourth birthday, she was dead.
The five months in between were an unending nightmare for Sonia and her family. Her parents, Vladimir and Natalya, took her out of Okhmatdyt on May 16, against the advice of doctors. But the Sitkins weren’t confident in the diagnosis or satisfied with the treatment. They were alarmed by the staff’s attitude and mistakes, and disgusted by what they regard as corruption.
“We saw the chemotherapy was killing our child,” Sonia’s father said. “At Ohkmatdyt, one of the parents had to stay there 24/7, with no sleep and constant stress. The expenses would escalate almost every day, the doctors would simply ignore parents’ concerns and cover up the nurses’ faults. Nurses mistreated her in two blood transfusions. Sonia went into shock and luckily Natasha called for help. Natasha said that Okhmatdyt smells like death. I feel sorry for those who trusted in doctors who indeed can provide little help.
“We don’t want to sue Okhmatdyt,” father Vladimir Sitkin continues. “We just want to draw attention to the issue of when the state leaves parents alone to fight a deadly disease. The parents have to pay for everything, look for donors, pay for blood tests, drugs, syringes, drip systems, blood transfusion filters, buy unregistered chemotherapy medications abroad, etc.”
Sonia relapsed at home on July 18, prompting her parents to take her to Kyiv Oblast Children’s Hospital and begin a campaign to raise $320,000 for a bone-marrow transplant abroad.
Sonia’s father went on a TV news program to talk about his daughter’s hardships. He shared the stage with Batkivshyna Party member of parliament Valeriy Suchkevich, who talked about how a government program meant to help sick kids had to be suspended because of abuse and kickbacks.
In Okhmatdyt, the head of the intensive chemotherapy department is a well-groomed, middle-aged man of the kind you see in glossy magazines talking about making their first million. He talks in short, chopped phrases like “sit,” “stand” and “I owe you nothing.”
The longest phrase I heard from him was “I don’t have to answer your question” after I inquired how they diagnosed the child and why they had not taken a probe from her lymph node. The correct diagnosis is vital as it helps to determine the right treatment and increases the chances of recovery.
But there are no explanations in Okhmatdyt. They say: needles are required (or filters, or adapters, or whatever) to treat the patient. Go ahead and buy them. Get the money somewhere and get everything we need.
They will tell you “the right” drugstore to go to, or “the right” dealer or the commercial laboratory that performs a particular test. They won’t explain why this exact one is needed.
They will say: “You need platelet mass. Go to the city of Bila Tserkva, about 80 kilometers from Kyiv, to a blood transfusion station, and buy it for Hr 3,000. That will last you for three days. It’s your problem, but in two days you child will die without it.”
They will say: “You need an anti-fungal drug. It’s not registered in Ukraine, but here is the phone number of Oleg – talk to him about it.”
The guy turns out to have the unregistered drug for Hr 1,400, or 10 times more expensive than it would be in the drugstore. And besides, this is an Indian generic knockoff. It needs special conditions for transportation, but nobody can guarantee its authenticity or that it was transported properly.
Money is made on lethally sick children. It seems that the semi-legal drug networks on the Internet are a money-making tool for traders, doctors and maybe all the way up to the Health Ministry. Our hospitals say they use international protocols for treatment, but the drugs are not available – at least not officially and not at affordable prices.
A couple from a village outside Rivne in western Ukraine is sitting in the hall. Their child is being treated for cancer. The doctors prescribe treatment costing $12,000. The mother is sobbing. The father is stunned. “Even if we sell the house, we won’t have enough – the maximum offer will be $5,000,” they say.
After the chief doctor realizes the couple has no money, it suddenly turns out that the needed anti-viral drugs are available for free at the hospital.
Before any treatment starts, all parents sign a so-called “information agreement,” which boils down to informing you that the odds of your child dying are in the 60 percent range. In other words, the child is more likely to die than remain alive. The agreement is basically designed to remove any responsibility from the doctors, including responsibility for mistreatment and misdiagnosis.
When I came face-to-face with Okhmatdyt, I called a hematologist friend, asking about the clinic run in a Nazi-style where it seems all the children die. She said: “Nobody kills them on purpose. Every child is a Klondike for the department. Nobody really treats them. Parents are just being used to pump out money. Then children are kicked out to die at home or to foreign hospitals.”
This raises a lot of questions about the society where we are forced to live and its morality. The organizers of this medical business make money off the parents of the children who die in their care.
I will never believe that Health Minister Raisa Bohatyriova and the president’s Party of Regions can change anything. There is too much money involved.
When there was still hope, 1+1 TV channel showed Sonia Sitkina in the news, telling the nation about my niece and her parents’ quest to raise money for an operation. Shortly before her death, her father had to sneak into Belarus like a criminal to buy chemotherapy drugs and, like a drug dealer, smuggle them out of the country because he feared getting caught by customs officials.
In the end, “out of 10 kids that were with us at Okhmatdyt, only two kids survived,” Vladimir Sitkin said. The parents of one of the two surviving children raised $200,000 for a bone-marrow transplant in Israel. “At least we gave Sonia two months of quality time at home,” he said.
Sonia died before her Vladimir and Natalya raised the money needed for an operation abroad. The girl’s last words to her parents were to remind them to take care of her favorite cat.
Why does a country that declares it provides free health care allow such horrendous conditions and treatment? Why is entering this hospital like a death sentence?
Issuing this girl’s death certificate to her grieving parents turns out to be the only thing that this country did for free.
Okhmatdyt defends treatment of Sonia Sitkina
Olena Meshkova, the deputy head of Okhmatdyt, responded to allegations of poor treatment involving the case of Sonia Sitkina, who entered the hospital on April 16 with a diagnosis and whose parents removed her from the hospital on May 16. The 3-year-old girl died of acute myeloid leukemia at a different hospital on Sept. 18.
“I remember this case very well. On multiple occasions, I took part in consultation on this case,” Meshkova said. She said the mortality rate of this particular type of cancer is extremely high, up to 80 percent.
Meshkova said that the hospital uses a German protocol for treatment of such cases, but the mother considered the protocol to be outdated. The mother also challenged the diagnosis and insisted on multiple consultations with other hospitals, even though she did not see the results of the tests, Meshkova said. Doctors decided to interact mostly with the father, Meshkova said.
“Everything here is voluntary, so parents can leave whenever they need to,” Meshkova said. “As a rule, the parents of deceased children have a lot of complaints. But the parents are guilty because they left for nowhere [taking the girl home on May 16]. We have no reason to be trying to justify ourselves.”
Meshkova said that Sonia Sitkina’s parents came to the hospital too late and the child did not respond well to treatment “Our statistics [involving successful treatment] are within the European range,” she said.
The administrator also said that the hospital has enough drugs, so that parents often don’t have to buy any medications. She said the hospital has a board of guardians that provides medication in cases of shortage.
Okhmatdyt defends its treatment record
Maryna Kozelkova, head of the organization and methodology department for Okhmatdyt state children’s hospital, responded to the allegations described in these two front-page opinion pieces. Kozelkova called the accusations “shocking.” She also said the hospital has successfully treated thousands of children, including those who suffer from some of the worst and most difficult to cure diseases. “We’re a clinic of the fourth level, meaning that we get the most complicated cases from the whole country,” Kozelova said. Here are the statistics Koszelova provided:
18,303 patients were admitted to the hospital last year on an in-patient basis;
55 percent of patients were released after full recovery; and
38 percent of patients were released with improvement to their health condition
Svitlana Piskunova of Kyiv is the aunt of Sonia Sitkina, who died of acute myeloid leukemia on Sept. 18 just days before her fourth birthday.
