Ukraine has one of the lowest success rates in treating TB in Eastern Europe and Central Asia. As a result, each year the disease claims the lives of 6,000 Ukrainians.
Despite the fact that tuberculosis is curable, the TB mortality rate in Ukraine exceeds the number of deaths due to traffic accidents, emergencies and even during the Anti-Terrorist Operation. This discouraging figure was announced at the First National Conference “Community Efforts Mobilization in Fighting TB in Ukraine”, which took place on October 9-10 in Kyiv on the initiative of the TBPeople Ukraine patient organization.
“A year ago, the very fact of holding such a conference was unlikely. But today in our country everything becomes possible. It is the proof of work of the best team, it shows that the partners are ready for action and dynamically consolidate their efforts to ensure that something changes in the TB response in our country”, emphasized Olga Klimenko, Chair of the Board of TBPeople Ukraine, at the opening of the conference. – “I understand that we have a very long way ahead. The problem of tuberculosis has been ignored for too long, human lives were neglected and the approach to the TB treatment in general was overlooked. I hope that everything that happened this year will lay a strong foundation for curbing the TB and ensuring that the situation will never roll back to what we had in the past”.
“I represent patients. I spend a lot of time with people who are ill with tuberculosis and trying to inform them what is happening in our country. I remember a lot of human stories of struggle with TB, both of winning and losing. They are all very important, every human life is very important. And today I and my friends will openly share our 5 completely different stories so that you can all understand more about what a patient with tuberculosis experiences in Ukraine, that TB can affect every family and why patient organizations are established”.
Experts note that the TB epidemic problem in Ukraine has elevated to the national level. 28,000 of new TB cases per year are only officially registered, however, experts assume for a good reason that the actual number of patients is significantly different from official statistics. Today more than 50.1% of cases of tuberculosis in Ukraine are registered among the population capable of working and aged 25-44.
Ukraine is the first to discuss tuberculosis problems with all stakeholders at the national level s. More than 110 participants of the event, including the representatives of the public sector, healthcare systems of Ukraine, non-governmental and patient organizations, experts of international organizations attended the venue of the first national conference to discuss the current situation. The key issues of the conference are the strengthening of the patient community role in decision-making, modern solutions and practices in the TB treatment, as well as transitional actions, when financing of the fight against socially dangerous diseases will be completely handed over from international donors to the government of Ukraine.
Viktor Lyashko, First Deputy Director of the Center for Socially Dangerous Diseases of the Ministry of Health of Ukraine, at the opening of the conference, noted the importance and timeliness of such an event. Indeed, it is precisely now that the national health system is reforming.
In the whole world, people who have defeated tuberculosis are, unfortunately, left alone to tackle their problems, because all health systems are primarily focused on the fight against infectious disease. The person has to struggle with the social problems and the consequences of the treatment only on their own. “Therefore, as a representative of state authorities, I am glad to welcome the consolidation of people who have overcome tuberculosis. This consolidation will help us to build the appropriate system, and all together, we will be able to overcome tuberculosis by 2030“, Victor Lyashko summarizes.
Aleksey Kirichenko, a representative of the Parliamentary Caucus against TB, noted that many processes in Ukraine are progressing towards the right direction just because of the enthusiasm of the activists. The country has a certain experience of interaction between civil society organizations and the state. There are solid positive examples of new types of treatment, advocacy, and support for patients with TB, but the role of the state should be increased. After all, treatment requires considerable expenses, just like advocacy and patient support. The country has the opportunity to try new types of treatment taking advantage of the donor funding.
“The state has finally conceived that it must finance the treatment of tuberculosis”, stated Aleksey Kirichenko. – Thank God, there are people in this room who understand the importance of the issue, thank God, that there are people who have survived tuberculosis. We must remember that each year TB claims 4,000-6,000 of lives. This is more than the death count of traffic accidents, of emergencies, and excuse me for a comparison which might be not appropriate, but this is more than the number of people who annually die in the Anti-Terrorist Operation. Therefore, it is very important that we all understand the urgency of cooperation.
If we talk about the steps we should take, then by 2016 we had the TB treatment program. In 2016 it ended. In the course of the next two years, we only adopted the concept. The government did not allocate a TB treatment in the next year’s budget. Therefore, we will manage to set it up after a year the soonest. Thus, the political role of the civil society is extremely important, as it is a more sustainable structure, able to further push other actors to resolve these matters, so that we could achieve the goals we set for ourselves, and this goal is to ensure registration and enrolment of all TB cases by 2030″.
The TB epidemic in Ukraine combines 3 components: an epidemic of TB treatable with traditional methods, an epidemic of TB/HIV co-infection, as well as an epidemic of multidrug-resistant tuberculosis (MDR-TB), the most unpredictable and least susceptible treatment, which accounts for up to 71% among newly-identified cases.
Dmitriy Sherembey, Chairman of the Board of the “100% of Life” Civil Society organization, emphasized at the opening of the conference that the launch of TBPeople Ukraine movement, in his opinion, considerably outmatches all other previous initiatives, which needed a lot of time to grow into big movement. Moreover, Mr. Sherembey shared his personal story about why it is of personal importance to him that the tuberculosis in Ukraine be defeated:
“For 12 months in a row I had to treat tuberculosis and I know exactly the beginning and the end of this path”, he said. – I understand for sure what suffering a person with this diagnosis has to bear. And they need to go home, where their little child waits for them. They need that portion of strength which they still have to go work, earn a living for their family, socialize, and do a lot of other things. With each new month their strength is dwindling, and dwindling, and dwindling. You know, these 12 months, while someone needs as much as 18 or even 24, is not an easy road to life. And, as it was already mentioned, 6,000 people do not manage to get to the end of this road. Unfortunately, there are also those in our country who cannot be treated for one simple reason – technologically there are no medicines that would give him the opportunity to survive”.
The situation is cynically absurd, as we live at a time when the technology, the diagnostic tools, the doctors – in fact, all the opportunities are available. But there is another shortage, namely of resources, that is associated with the improper distribution of finance. It is important to understand that these resources are allocated to life, and not to salaries, etc. The Ministry of Finance should have to decide not how many pills they must buy, but how many people would survive. For example, this year they will decide that 50% will survive, and other 6,000 are left to die die. Of course, it is difficult to make a decision under such a formula, because there is already a person, history and consequences behind this decision”.
According to the Center for Public Health of the Ministry of Health of Ukraine in 2017, 27 121 cases of tuberculosis were recorded, which is 64 patients per 100,000 of the population. The leaders are Odessa (108 patients with TB per 100 thousand population), Kherson (73.0) and Kirovohrad (70.3) oblasts. Despite the high cost of TB treatment (the average cost of hospitalization day is $32, and only 10% of this amount is allocated to diagnostics and treatment of illness), Ukraine has one of the lowest rates of treatment success in the Eastern Europe and Central Asia region.
75% of TB patients are people capable of work and aged 18 to 54. 50?1% of the patients belong to the 25-44 years old age group.
Roman Gailevich, UNAIDS Ukraine Director, said that TB tales a special place in the UNAIDS work, since TB is the leading cause of mortality of people living with HIV, not only in Ukraine but also throughout the world.
He also noted that since 2015, the mortality rate for TB in PLWH is declining: “There are many parallels in the response to the HIV and TB epidemic, but I would like to focus on the second one. First of all, we no longer pursue improving, intensifying, accelerating, we are talking about the eradication of these diseases by 2030. And we are talking about it at the highest level. These goals are, of course, very ambitious. In Ukraine, where structural changes in the health care system are now underway, there are additional challenges related to the primary care reform, the challenges associated with the distribution of responsibilities between the new primary unit and specialized medical institutions, the methods of management of patient with HIV, TB, challenges related to financing, considering the creation of a new specialized agency that will be engaged in procurement of drugs. The second parallel is associated with the community mobilization”.
Andrey Klepikov, Executive Director of the Alliance of Public Health: “In the current wave reforms everyone talks about patient-oriented approaches, but the voice on the part of patients will be the most powerful one in deciding, which approaches to TB treatment should be used for each patient”.
Immediate introduction of patient-oriented models, transition from traditional to increasingly recognized outpatient treatment systems should take place with the active participation of the patient. After all, it is the patient who is the first to experience if something is omitted or failing”.