After the closure of the Okhmatdet department, coffins were brought to the Rada. Photo: LB.ua
Nine Ukrainians die every day without receiving a transplant. The law passed by the Verkhovna Rada hasn't taken effect due to the lack of concrete action from the Ministry of Health, while doctors openly state that officials profit from ignoring the problem. Kickbacks for sending select patients abroad allegedly amount to up to 15% of €150, while domestic transplantation is dying. We investigated who's profiting from human lives. "Vesti".
They didn't wait
Recently, 15-year-old Nazar Balyk from the village of Vyazivne in the Lyubeshiv district of the Rivne region died in India. He had lived abroad for a year in hopes of a heart transplant. In Ukraine, he was unable to obtain a donor heart because there was no relevant law.
Nazar isn't the only one who wasn't able to undergo surgery with foreign surgeons. Three years ago, eight-year-old Yulia Sokoltsova from Odessa didn't even get the chance to travel abroad for the heart transplant she desperately needed. It took six months to gather the necessary documents, and the Ministry of Health delayed the decision—the commission meeting to decide whether to send the little girl to an Indian clinic was held too late. It later turned out that officials hadn't sent the clinic a letter of guarantee.
Meanwhile, the family of 17-year-old Vanya Kovriga, who had been battling a terrible disease for two and a half years, was planning to donate money for the girl's operation. His heart was constantly enlarging and no longer fit inside his chest. Vanya had to undergo the operation in Belarus, as treatment was unavailable in Ukraine. He personally appealed to the government to allow a transplant in Ukraine, as he was not alone, but his request was ignored. Due to legal restrictions, transplants from unrelated donors are extremely rare in Ukraine. Only eight heart transplants have been performed in the history of independence. And only a few receive a chance to live. How many more children must die before the government finally pays attention to the problem of organ transplants in Ukraine, if nine people die every day without receiving a replacement for their diseased organ?
"The law exists, and there are doctors who know how to prepare organs and who are willing and able to save people, but the transplant system itself isn't built. Seriously ill patients are dying because they can't receive the necessary medical care in Ukraine. We lose people every day due to the criminal inaction of officials and public indifference," Yuriy Andreyev, chairman of the national movement "For Transplantation," told Vesti.
Indeed, one of the first patients to receive a deceased donor heart transplant at the Heart Institute in Ukraine lived for 15 years. Only recently, Kharkiv resident Eduard Sokolov passed away, having had his life extended by Professor and Institute Director Boris Todurov. There have been no heart transplants in Ukraine in the past seven years. Belarusians, meanwhile, have increased the number of transplants by 40 times. They also accept patients from Ukraine for heart transplants, receiving $120–$250 from the Ukrainian budget for each operation.
Rollback - 10-15%
Recently, Prime Minister Volodymyr Groysman stated that transplantation is impossible in Ukraine because legislative changes are needed. This is despite the fact that last year, the Law "On Transplantation of Organs and Systems" was passed and was supposed to take effect on January 1, 2019. It includes the following provisions:
- consent to donation during life;
- organ exchange between living donors who are not related - the so-called "cross-donation";
- the emergence of a transplant coordinator—a liaison between the donor and the recipient;
The creation of a Unified State Transplant Information System, which will contain data on all people willing to become donors and where donor-recipient pairs can be selected.
However, a registry of potential donors was never created. Doctors believe this situation is highly advantageous for Ministry of Health officials responsible for sending patients abroad for treatment, as they receive at least 10% of the state budget for each patient.
"The law came into force; it should have worked, but it doesn't, because there's no donor registry, no coordinators, and no equipment to determine brain death or confirm death has been purchased. The Ministry of Health and its head, Ulyana Suprun, are now spearheading medical tourism, which is very profitable. Through affiliated foundations registered abroad, a clinic is selected to transport Ukrainians, and the clinic pays 10-15% for each patient. There are double payments—through the Ukrainian foundations and the Ministry of Health, and then a portion of the money is returned to the foundation's account. Therefore, some Ministry of Health officials and the foundations that partner with them are interested in medical tourism," Valentina Markevich, director of the Children with Cancer Aid Foundation, told Vesti.
Oleg Ryzhak, head of the primary trade union organization of the NDSB, OKHMATDET, estimates the kickback amount at 15%. "The cost of the operation is an average of €150 per patient, and there's double funding: state funding to the foreign clinic and from some charitable foundation (the same €150), but it disappears into thin air," Ryzhak told Vesti.
Who is eligible for free treatment?
This year, 690 million rubles were allocated from the budget for transplants abroad, although, according to the Children's Cancer Aid Foundation, only 250 million rubles are needed for the development of transplantation in Ukraine. This year, approximately 400 million rubles have already been spent on foreign clinics, and the number of patients is growing. But traveling abroad for a surgery is no easy task.
Lyubov Miroshnichenko, a resident of Mykolaiv, is still gathering documents to send her son to Belarus for a transplant. "We submitted the documents to the regional health department, and they were accepted on the second try—a success, I think, because we were missing some paperwork. The regional health department spent a week writing a cover letter and another three days sending it. The Ministry of Health accepted the documents, provided an incoming number and date, and sent them to Belarus within the required timeframe. Then the regional health department called, saying they were missing income documents for everyone registered in the apartment. I'm afraid we're in a jam," Lyubov Miroshnichenko complained to Vesti. She's very nervous, as precious time is running out.
Only a handful of people are sent abroad under the "Treatment of Ukrainian Citizens Abroad" program. "The problem is that of the thousands of Ukrainians who desperately need organ transplants, few know they can travel at the state's expense. And they slowly die at home. But thanks to this program, whose funding was increased back in 2013, we're saving hundreds. The program is temporary; it should be in effect until organ and bone marrow transplants can be performed here," says Yuriy Andreyev.
According to him, Indians are already refusing heart transplants to foreigners because, according to new regulations, Indians must stipulate in their wills that their organ can be donated to a foreigner. Since last fall, not a single transplant has been performed on a Ukrainian in India. Instead of living people with new hearts, three zinc coffins arrived. Soon, they'll bring Nazar Balyk, who waited a year for a transplant.
According to Boris Todurov, Director of the Heart Institute, 56 recipients are currently on the heart transplant waiting list. But sending them abroad isn't an option. "Parliament passed a more or less acceptable law, but the Ministry of Health still hasn't created a unified donor registry. Without a registry, all transplants, even related ones, have stopped since the new year of 2019, and Parliament was forced to suspend its own law and postpone it for a year. The registry's development was entrusted to another deputy minister, who recently submitted her resignation. It's clear that by the end of the year, unless new people are appointed to the Ministry of Health and the current ones are ousted, the law will never be implemented. They simply ignore the functions entrusted to the Ministry of Health. The price of this negligence is nine lives a day; about five thousand people die each year without receiving a transplant," Boris Todurov told Vesti.
At the same time, as the surgeon notes, only a few, or at best dozens, can be sent abroad: "A transplant for our patients, for whom we sew mechanical hearts, costs $120. How much can the state send abroad with taxpayers' money?! If it's done here, it costs ten times less," asserts Boris Todurov.
Ineffective spending
An audit conducted by the Accounting Chamber of the effectiveness of the state budget funds allocated to the Ministry of Health in 2016–2017 for the treatment of Ukrainians abroad, amounting to UAH 1.161 billion, revealed that as much as 51% was used ineffectively. For example, UAH 19.9 million of budget funds were not spent by the end of 2016 and 2017, and citizens registered for treatment abroad did not receive treatment. "This is criminal negligence on the part of officials, which can even be interpreted as abandoning people without assistance," Todurov believes.
Meanwhile, centers in Ukraine are closing and transplant specialists are being laid off. "In August 2018, our Children's Oncohematology and Bone Marrow Transplantation Center at the OKHMATDET Children's Oncohematology and Bone Marrow Transplantation Hospital was deliberately destroyed. The team of doctors was accused of violations, including corruption, and the center was closed. Now we only perform four bone marrow transplants a year," notes Valentina Markevich.
Moreover, according to Oleg Ryzhak, a doctor at the OKHMATDET Children's Hospital, the strange thing is that not only were the center's doctors no longer needed, but also the expensive equipment and specialists trained in the best European clinics. "A bone marrow transplant abroad costs €150, but in our country it cost €50. The parents had to spend money only to buy what wasn't available. Since 2016, funding has been declining, and the parents have had to spend more," says Oleg Ryzhak.
The center performed 25-27 bone marrow transplants annually, with a cure rate of approximately 60%, which is in line with international standards. "On average, about a thousand children in Ukraine are diagnosed with cancer each year, and 30% of them require a transplant. Therefore, we need to create new centers, not just close them, but create as many new ones as possible," emphasizes Oleh Ryzhak.
When will they come to us for treatment?
The Ministry of Health reported that they have already purchased a ready-made bone marrow donor registry. Other registries will need to be created independently, and, of course, a system will need to be developed to integrate them. Purchasing ready-made ones is not feasible, as each country has its own laws and information security requirements. Furthermore, training for transplant coordinators has already begun in Ukraine.
"These are the people who, on the one hand, must communicate with families and explain why they must sign donation documents. On the other, they must coordinate the entire transplant process. They train for one month," said Acting Minister of Health Ulyana Suprun.
The Ministry of Health is also deciding how organs will be transported from one location to another—by car or helicopter. However, of all the organ transplant centers in Lviv, Kyiv, Odesa, Dnipro, Kharkiv, and Zaporizhzhia, officials plan to retain only those in the capital and Zaporizhzhia. OKHMATDET and the National Cancer Institute will perform bone marrow transplants, while the Zaporizhzhia Regional Hospital and the A.A. Shalimov Institute of Surgery and Transplantology will perform organ transplants. 50 million hryvnias have been allocated for the purchase of the necessary equipment.
"Furthermore, it's essential that local hospitals have equipment to confirm brain death. One set of such equipment costs 1,5 billion hryvnias. We hope that local authorities will be able to purchase some of it, and we will also provide some assistance through pilot programs. But an important condition is that we need to not only purchase the equipment but also train staff to confirm this type of death. It's possible that we'll employ invited experts. For example, there will be a mobile team in one hospital in a small town that will then work with other facilities if needed," said the acting Minister of Health.
Doctors are pinning their hopes on the Ministry of Health recruiting people who can elevate healthcare to international standards. So that people will come to us for treatment and surgery, replenishing the country's budget rather than draining it. "I performed my first heart transplant 20 years ago. And our patients live 15-16 years after the transplant. We, as doctors, have demonstrated and proven everything, now it's up to the state," emphasized Boris Todurov, Director of the Heart Institute.
A piece of junk food for cancer patients
There is another significant problem. According to a report by the Accounting Chamber, expired medications worth UAH 1,704,000 were imported into Ukraine for the treatment of children with cancer and oncohematological diseases, as well as children and adults with chronic viral hepatitis. The medications were obtained from the international specialized organizations Crown and UNDP. Furthermore, due to expiration dates, immunobiological drugs and medical devices worth a total of UAH 6,750,700 were not used at all in 12 procurement categories (by disease type).
Doctor Oleg Ryzhak claims that the problem of purchasing low-quality, cheap medications—so-called "fuflomycins"—has been around for a long time. This even became one of the reasons for the closure of the children's oncohematology and bone marrow transplant center at the OKHMATDET Children's Children's Hospital. He claims the team opposed the foisting of cheap medications—unclassified generics—on children with cancer, lacking evidence of efficacy and safety, as well as the supply of medications with expiring expirations.
"According to the UN Convention on the Rights of the Child, generic medications are not allowed for use by children. When the Ministry of Health tried to procure such cheap medications before 2014, they listened to us. But when Suprun took over, the purchase of medications five to ten times cheaper than the original ones became widespread. Since 2016, they've been exclusively purchasing them, and we're seeing the results: the incidence of illnesses has increased and they're progressing. While the original medication actually helps patients, the generic version makes things worse. Meanwhile, the Ministry of Health is trumpeting about cost savings," explains doctor Oleg Ryzhak.
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