On 5 April 2015, Alliance for Public Health (Alliance) together with its partner civil society organizations held Hepatitis C: Game of Survival campaign near the premises of the Cabinet of Ministers of Ukraine. Participants of the campaign demonstrated the “deadly slot machine” to policy-makers and mass media, demanding to solve the urgent problem of allocating budget funding to treat patients with hepatitis C virus (HCV).
According to the official data, there are 73 thousand patients with HCV registered in Ukraine, among them at least 40 thousand urgently need treatment. However, those numbers do not reflect the real situation with the spread of epidemic. As estimated by WHO, more than 5% of people in Ukraine are infected with HCV, which is over 2 million people! It is hard to say how many of them should have already received treatment. There is no official register of patients, though it should be established in accordance with the National Viral Hepatitis Program.
Back in March, people living with HCV, doctors, and civil society organizations were looking for the results of the long-awaited government competitive bidding to procure drugs for HCV treatment, as there was a hope that after international organizations take over the procurement, innovative treatment will become more accessible. However, the bidding results have not been made public yet, and even the expected amount of drugs will cover only a minor share of patients. 6.1 thousand bottles of the modern drug, sofosbuvir, planned to be procured with government funding, may be enough to cover 2,000 standard treatment courses! Such number of patients who will be able to receive treatment will no way help to eliminate the HCV epidemic in Ukraine. According to the best-case scenario, only one of 20 patients who urgently need treatment today, will be able to receive the therapy within the government funding. Patients’ selection criteria should first and foremost depend on the severity of disease, but in practice the existing corruption schemes may make certain adjustments in the selection procedures.
People living with HCV unwillingly became hostages of a very dangerous game, and now their fate depends on the “deadly slot machine” – some of them will be lucky to receive treatment which will give them a chance to survive. Meanwhile, thousands of other patients will not live to see the next round of the slot machine operation! Delays and half words from the side of the Government, the Ministry of Health, and regional administrations make patients and treatment advocates go out on the streets. These days, similar campaigns will also be held in many regions of Ukraine to make responsible public officials review budgets and allocate additional resources to procure treatment courses from local budgets. In 2014-2015, in Ukraine only about 100 patients had a chance to receive treatment at the cost of regional budgets, but unfortunately it is typical when even regions with budget surplus, where over 10 thousand people are registered living with HCV, local authorities count only on the national funding of such treatment. At the same time, there are success stories of regions with budget deficit, which apart from the courses allocated within the National Program, also find a way to procure life-saving treatment within their competence. Most heads of regions count on the funds allocated within the National Program and on the treatment courses provided by Alliance. But such approach is self defeating and extremely ineffective – programs of international donors will be shut down next year, and the National Program will be over in December 2016. Thus we have a paradoxical situation when there is nobody who cares about patients. And the treatment program is available only on paper in order to report on its existence, and even if the program is implemented, it is often done “for the sake of appearance” and not to really save thousands of lives!
“Current HCV treatment is very expensive, in developed countries it may cost up to USD 80,000 per course, – underlines a community activist, Julia Dorokhova. ¬– Today the innovative drugs have already been registered in Ukraine, and hundreds of patients were able to get treatment within the Alliance program. But now we have all found ourselves in a situation when we are players in a “state casino” – nobody knows if any money will be allocated for treatment, if policy-makers will remember about tens of thousands of patients or if they will go on thinking that there is no epidemic of HCV? It is not enough to just approve a program, when people’s lives are at stake”.
At the same time, in the center of Kyiv a mobile clinic was operating, where all people could receive professional counseling on HCV diagnostics and treatment as well as special forms for examinations.
“Not a single country in the world knows the exact number of people infected with hepatitis C virus, because the infection process is hidden, – says Professor Olha Holubovska, Head of Infectious Disease Department at the Bogomolets National Medical University, chief infectious disease specialist of the Ministry of Health of Ukraine. – Our consolidated efforts allowed to approve the National Viral Hepatitis Program as well as 16 regional programs; introduce amendments to the treatment guidelines, which were brought in line with the international standards; and register innovative direct-acting antiviral agents in our country. Now Ukraine has to develop new modern strategies aimed at elimination of viral hepatitis in line with WHO objectives. That is why we are currently working on those tasks together with civil society organizations. Unfortunately, the level of funding of the National Program is very low, with many activities not financed at all. Also, not all regions of the country demonstrate sufficient commitment in this regard – even the existing local programs are either not financed at all or are financed at an extremely low level. To comply with the WHO Global Strategy, it is not enough to provide only treatment – this strategy also stipulates improvement of the epidemiological surveillance system, implementation of prevention activities, etc. If we stop at this stage, further spread of HCV epidemic will have disastrous consequences for Ukraine”.
So far treatment of HCV depends on the operation of the “deadly slot machine”, allowing only one in twenty patients to win a chance to receive life-saving treatment within the state budget. But will this machine operate at all or will the statesmen just forget about tens of thousands of patients waiting for their therapy? The situation with HCV epidemic becomes more and more pressing. The countdown of people’s lives in this Live Casino is going on…
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Over 150 million people in the world are infected with hepatitis C. The threat of the spread of epidemic in Ukraine grows in the context of the economic crisis and military conflict in Eastern Ukraine. One of the priority areas of the activities of Alliance for Public Health and its partners is response to the epidemic of hepatitis C in Ukraine and provision of HCV diagnostics and treatment for vulnerable groups and general population. In 2015, Alliance launched the first program of treatment with a new-generation drug – sofosbuvir, which is expected to cover up to 2,000 people. 203 patients have already completed their treatment courses. As per the set standard, 12 weeks after completion of the therapy patients are to go through a follow-up examination – and it shows that in 90% of those who receive treatment HCV is undetectable. This is a huge step forward as compared to the old treatment regimens (peginterferon + ribavirin), when the indicator of successful treatment outcome was no more than 50%. In 2014, Alliance managed to negotiate significant price reduction with the manufacturer, which allowed for the first time in Ukraine to procure sofosbuvir at the price of USD 900 per course.