How one man’s struggle led to a health care success in Ukraine

Posted February 16, 2018

Ivan Zelenskiy's fight for patients' rights began after he was diagnosed with chronic myeloid leukemia. Photos: UNDP Ukraine / Stanislav Vlasov

Seven years ago, Ivan Zelenskiy was feeling tired and stressed. He thought it was connected to his hard work leading a team of engineers for the power plant in Kremenchuk, Ukraine. But during his health test at work, he received the shocking diagnosis of chronic myeloid leukemia.

At home, he searched on the internet and discovered it was blood cancer. He and his family went through heavy stress, unsure of what it would mean for his future. It’s rare for men under 45 to contract this type of cancer. It gets worse quickly if left untreated.

Ivan was fortunate to be able to afford the comprehensive tests necessary to get an official diagnosis and thus prescribed treatment. 80 percent of chronic myeloid leukemia patients go into remission after treatment.

But Ivan was shocked to learn the daily drug regimen of Imatinib, a biological therapy medicine, cost US$1000 per month – more than twice his monthly salary.

In Ukraine at the time, the state only supplied medication for a portion of the total number of patients. Medicines were often procured regionally, so access depended on local budgets and efficient procurement.

At the time that Ivan was diagnosed, two out of three patients were not receiving their medication, which meant they were slowly dying.

Ivan started to look into how to afford his treatment, which led to researching patients’ rights in Ukraine.

Ivan waits for his doctor and his prescription.

“I found out the state buys medication for patients like me, but it’s not enough for all of us." 

In his region Poltava, only 11 out of 40 patients needing Imatinib were covered.

To increase his chances of getting coverage, he relocated to the larger city of Dnipro, which had better qualified doctors and a larger local budget. By writing letters and meeting with the health department and high regional officials, he successfully lobbied for funding to cover more patients with chronic myeloid leukemia, including himself.

With this first victory under his belt, Ivan decided he would not stop there – not until all patients in the country were covered

Ivan attended a leukemia conference in Germany and connected with a global network of patient organizations working in the area of chronic myeloid leukemia. Learning what tools and methods could be used to protect patients’ rights, he wrote letters, to the President and Prime Minister of Ukraine and got them co-signed by a number of European patient organizations. Thanks to this influence, additional funding was allocated for treatment.

Since 2011, Ivan has been advocating for patients' rights.

He started an organization in 2015, Kraplya Krovi (“Drop of Blood”) to work with national and local authorities to make sure patients have access to the medications they need. In meeting other similar organizations and activists, he found the issue of accessible, affordable medicine was not just isolated to leukemia medications. It affected those facing many other illnesses, including tuberculosis and cystic fibrosis.

Patients realized agreements between the Ministry and the pharma companies were not transparent. “It was difficult for patients to understand who buys medicine or at what price, and even how the number of patients was calculated,” Ivan said.

State procurement was fully controlled by local distributors, which increased the likelihood of kickbacks being given to doctors and chairmen of tender committees. Corruption increased drug prices up to four times higher, which drastically reduced the state’s ability to buy enough medicine for everyone.

Ivan meets with members of “Drop of Blood” patient organization.

They discuss medical affairs and the latest developments in the leukemia sphere and plan their advocacy activities.

In 2015, Ivan’s NGO and others, under the umbrella organisation “Patients of Ukraine”, turned to public demonstrations to demand better procurement. Around the same time, the Ministry of Health of Ukraine requested international organizations, including UNDP, to respond to the crisis and take over the procurement. 

In doing so, the ministry received strong support from the patient community, which trusted the transparency that international organizations could bring.

Now in its third year, the new procurement chain is clearly more efficient. For myeloid leukemia medicines, UNDP saved 11 million UAH (US$410,000), which allowed coverage for 100% of the eligible patients requiring Imatinib.

UNDP procures drugs for 26 different programs. The process has saved up to 45 percent of the allocated budget, allowing for coverage of more patients and diseases. More than 70 percent of medications are now bought directly from manufacturers and long term deals have been arranged to further reduce costs.

UNDP is now working on putting transparent procurement back into the hands of the government, and is helping set up a government agency to take over that task.

After his seven years of treatment, Ivan is now in full remission thanks to the drug regimen. He feels good about what he has accomplished, but his fight is far from over. He and his organization’s goal is to make all leukemia medicines available for patients in Ukraine, as well as to teach patients how to advocate for their rights.

Ivan Zelenskiy talks with his doctor about his chronic myeloid leukemia treatment.