The largest patient organization, the East Europe and Central Asia Union of People Living with HIV (ECUO), celebrates its thirteenth anniversary since the establishment by an initiative group of the HIV activists in EECA.
The milestones of the regional network of networks (ECUO) allow us to track the development and strengthening of the patient community influence on improving access to HIV treatment and quality of life for more than 1.6 million people living with HIV in Eastern Europe and Central Asia.
Earlier this year the changes in the ECUO governance structure were announced. According to the ECUO website, the organization Board was instituted and the Executive Director was appointed, which will act on collegial terms to address new challenges. That’s why Igor Kilchevskyi, one of the ECUO founders 13 years ago, was appointed as the Executive Director. The organization continues to influence the decisions of governments and the stance of international organizations in the area of health and respect for human rights through its advocacy activities.
In an exclusive interview for Minus Virus, Igor Kilchevskyi, Executive Director of ECUO, told about existing challenges for the organization, plans for the near future and expectations when HIV/AIDS will be defeated.
I.G. Igor, 2 years ago you greeted the colleagues with the following words: “Dear friends, happy birthday! The ECUO history has already started many years ago and will continue without intermissions. We are not testing some trial version of events. Each of our actions matters. Of course, we know our weaknesses, every organization has its own drawbacks. We understand and accept this fact. However, it is our strengths that are more important and should be prioritized. They should be developed, while this sometimes does not come along with opportunities for personal growth, unfortunately, and takes us beyond the comfort zone. We should accustom ourselves to the fact that, on the contrary, we need to get out of the comfort zone, find solutions to the problems, which means actually discovering and entering our discomfort zone; we need not wait for the best moment to act, but get things addressed right now, if we are striving for progress in development and change. Do not wait for a more suitable time. It has already come”. Very inspiring and such personal appeal, which, of course, did not become less relevant in 2 years. For all thirteen years of the ECUO operations, you took an active part in the development of the organization as a participant in the general meeting, today you are the Executive Director. Tell us, what was the reason behind the management structure change and why it happened now?
I.K.: The East Europe and Central Asia Union of People Living with HIV is a huge, strong regional organization created by people living with HIV, which, from my point of view, is as transparent as possible and whose activities have become a powerful tool in protecting the rights of PLWH and vulnerable groups. In addition, I would like to highlight the contribution of the ECUO Secretariat, which ensures coordination of all activities and acts as the focal point for heads of the country organizations and the ECUO Director. In general, the country organizations are becoming prominent, their leaders are visible and promoting the consolidated ECUO strategy in countries, you can see the results of their actions and excellent examples of partnership and mutual support. From my point of view, the ECUO as a structure has set unprecedented standards in our region.
What was it created for? To make advocacy in our region more effective. As early as 13 years ago, we saw that there is a need to influence our governments, taking advantage of opportunities at the international level. When, for example, a problem cannot be tackled in a particular country, we propose to address the situation through discussion of possible best solutions with the whole region, sometimes through criticism, and this method can be faster and more effective than many, many of our advocacy efforts that we implemented in our countries and that face opposition from officials. If there is support and experience sharing, such regional level may yield decent results. As we hoped at the beginning of the journey, we strived and achieved this through our efforts, and today the voice of the PLWH community in the EECA region can be heard all over the world.
Why did the changes take place? Like any structure, like any organism, the ECUO is growing, changing, improving, adapting to new challenges. All organizations, regional networks and key international organizations implemented their projects in partnership with the ECUO. In spite of the fact that, according to our opinion (note: the opinion of the Participants of the General Meeting of the organization is meant), the ECUO is a transparent, an absolutely open structure which has been functioning this way for more than thirteen years, there was recently some feedback that we are quite obscure, that it is necessary to become more transparent. We have taken these suggestions into account, moreover, there are proposals on expanding the membership of the participants. We favor insightful and reasonable decision-making, all key changes are discussed at the General Meeting, the proposals are comprehensively assessed and a change may take place only upon careful consideration. If the changes were only made to accommodate the expectations of our partners, these would certainly be some spontaneous decisions, immediate, out-of-hand decisions, while this process must take more time, because the ECUO, as represented by the General Meeting participants, is a versatile structure going through its own cycle of growth and change. We do not perceive this situation as a crisis, but rather consider it to be a logical step aimed at further development.
Management structure change is the first one from the planned scope which is already implemented. To date, the organization management structure comprised the Supervisory Board and the President, in addition to the General Meeting, and now two more structures are introduced: the Board, consisting of three members of the organization, and the Executive Director, who is also appointed by the General Meeting. It is essential that the Executive Director’s governance is as efficient as possible. The General Meeting understood that it is extremely important to have a manager who will make decisions based on the mission of the organization and who must have vast management experience, expertise in working with grant programs, interaction with donors, ensuring high performance of the huge scope of work and managing financial flows to accomplish all the tasks of the organization.
I.G.: That is, we needed not just an operation manager for the organization, but a person from the community who is directly involved in addressing HIV epidemic problem?
I.K.: Yes, that’s why the Charter clearly stated that the Executive Director of the ECUO may not appointed through external competition, although this does not prevent such a contest in the future. Only the General Meeting decides on the appointment of the Executive Director. And from my point of view, this is the right decision. I would like to add that we are also reviewing and discussing further changes now. We expect them to happen in the near future, this year or the next one. Currently, the ECUO is intensely working to expand its partnership. We are elaborating the option of splitting the Supervisory Board into external and internal boards. The External Supervisory Board will consist of representatives of reputable global organizations.
I.G.: What kind of organizations are they, who have been invited already?
I.K.: We will send out invitations after discussing and agreeing this issue at the General Meeting. Until we finalize this issue, I can not disclose the names of the potential organizations and their representatives. The next General Meeting is scheduled for the end of March 2018, after which we will address these matters based on discussions. We consider establishing an Internal Supervisory Board. In the new interpretation, the Internal Supervisory Board will have supervisory powers and be authorized to provide recommendations. Perhaps we will offer more for the External Supervisory Board and he will have the functions of the board of trustees, representative functions, take part in International meetings on behalf of the ECUO, etc. Moreover, if we talk about the supervisory board, which, perhaps, will combine these functions, I consider it important that the members of the Supervisory Board take part in the grant programs allocation. We hope that ECUO will be able to support the financing of activities of each organization in the EECA countries. We observe and record quite unfavorable changes that are taking place in our countries due to the shrinking Global Fund financing. In many countries, developed services are not fully covered by public budgets. This prompts us to take action. ECUO organizations in countries should focus on monitoring this situation. We need to understand how the funds are allocated, are these sufficient or not. We monitor, which public organizations receive these funds. It’s necessary to understand whether these are newly sprung organizations by some state officials and their affiliates, or the entities that gained credibility among the communities, that boast certain achievements and accordingly have the priority right to be awarded with state contracts for the service and support programs.
I.G.: What will change in the organization with changes in the management structure?
I.K.: We will become even more transparent and will continue to develop, because our organization is already 13 years old and this is only the beginning. Today we, quite obviously, need to make transformations in order to more effectively adapt to modern challenges. We took into account the recommendations of our partners, whose opinion we value and respect and strive to build fruitful relationships.
I.G.: What kind of organization?
I.K.: UNAIDS, first of all. For many years, UNAIDS has been supporting the ECUO. It is noteworthy that it was the UNAIDS EECA team that supported the establishment of the ECUO. We have always listened to their opinion, recommendations, we are sure that in the future we will receive expert evaluation of our activities from them in order to discuss constructively the changes that will be proposed.
I.G.: The next question is about the Secretariat. Are there any personnel changes planned in the ECUO Secretariat in connection with the Board structure changes?
I.K.: Of course, and this is logical. All will learn about this, everything will be transparently displayed on our website, with photos, with names, phones, so that one can understood the duties and responsibilities of the persons in question.
I.G.: Are you talking about staff expansion or redundancy?
I.K.: No, staff redundancy is not planned. We are working on projects that need to be carried out and staff redundancy is unacceptable considering the sheer amount of work.
I.G.: Now you are appointed to the post of Executive Director of the organization which operates in the largest geographical region of the world. In our region the HIV/AIDS epidemic is out of control. What priorities do you see for the organization for the next 2 years?
I.K.: It’s barely possible to set priorities better than UNAIDS has already indicated in the “90-90-90” Initiative, which ECUO fully supports. At the same time, we can forecast difficulties in the implementation process, as we have been working in this area for a long time, I have been in HIV-activism for more than 20 years. Of course, the first “90” is testing and we will support the rapid testing coverage in our countries, both in health facilities and on the basis of NOs, which will also increase the detection rate and ensure high quality counseling. We hope that this will facilitate the treatment intake.
Concerning the second “90”, that is treatment: to maintain adherence to treatment, the newest, high quality drugs without or with the least side effects should be provided to patients, taking into account the age groups, both children and people over 50. It is necessary to adopt the experience of those countries that have already reached these “90-90-90”. I find this approach to be the most correct, because reinventing a wheel will not add any value. It is necessary to introduce practices that have yielded very convincing results. And the ECUO has much more opportunities to collect best practices, because our coverage expands to 4 European countries, including Poland, which has experience in providing services, both in testing, treatment and retention in treatment. There are also countries of the Customs Union. There are countries in transition. There are countries whose development path is yet undecided. The ECUO can develop a better model and implement successful experience to achieve this target from the “90-90-90” goals in the entire region. We hope to strengthen cooperation, communication and interaction with international organizations and their regional offices in the EECA countries, with the leading role of UNAIDS. We have many common tasks, we are sure that we will meet even more often, plan joint activities, which will always be in open access and that will provide opportunities for participation in all regional and country networks.
I.G.: What challenges do you expect to face on this position? What is the most difficult to implement?
I.K.: Should I be outspoken or give it a bit of an “interview polish”?
I.G.: Please, tell the truth and nothing but the truth ☺
I.K.: The truth is that now I see gaps in the communications of the Secretariat with the participants of the General Meeting, though this is a transient situation. We need to find an interaction pattern to involve the General Meeting participants in the activities within all projects. And this is not only the initiative of the Secretariat. It is necessary that the participants of the General Meeting, on their side, became more interested in the work of the Secretariat, which, accordingly, will ensure greater control of the Secretariat by the General Meeting. The participants of the General Meeting should get more involved not only in making political, but also technical and operational decisions of the Secretariat as a whole. It was for this purpose that the Board was created.
IG: As far as I understand, the General Meeting is also interested in these changes to become more involved?
I.K.: Yes, you are right. Of course, the participants of the General Meeting are interested in this. They want to understand everything that happens in the organization, because all participants and their country teams should actively disseminate in their countries the same messages, which the ECUO broadcasts on the regional level. For example, this is expansion of access to innovative drugs for all PLWH in our countries. Therefore, it is important that the participants fully possess information about the activities of the organization and the Secretariat, and are involved in decision-making. We have ambitious but achievable tasks, however, of course, we perfectly understand that the situation does not allow us to implement and achieve everything at once. We are not Jinns, not omnipotent wizards who can fix everything with a sweep of a magic wand. We understand all the difficulties that will stand in the way to our goals. We braced ourselves for these difficulties, we are ready to work with pharmaceutical companies, with national government, with the legislators, with judicial systems. We are prepared for all this, we understand what we are up to and will pursue our goal. It’s because we are people living with HIV, and we are fighting for ourselves, for our children and those who are dear for us. Therefore, I do not see any reasons why we could discontinue our activities. If someone thinks that we will stop, they are deeply mistaken. Of course, we need a reload to become even stronger and more efficient.
I.G.: The organization celebrated 10-th anniversary of its official registration in 2017. Meanwhile, the ECUO is one of the first regional organizations that were founded as a patient community, isn’t it?
IK: Actually, we have started much longer ago, 10 years ago the organization was just officially established, while the decision to create the association was made 13 years ago, in 2005. In general, many of the ECUO participants have already started gathering and interacting since 2001. They began to hold meetings on the territory of EECA, we all got acquainted and became friends. We all speak the same language of sorts. For example, I have got acquainted with Voitek Tomchinski since 1996, since the First AIDS conference, to which I was delegated from Moldova. Therefore, we have been working for a long time as partners, as network organizations interested in joint activities. In order to continue operating as a single entity, in 2005 a decision was made to register the organization. We have been contemplating this registration for a long time, there were some legal difficulties at that time. But in 2007 we managed to solve it and the first Network of PLWH of the region was registered.
I.G.: Why did it take so long to register the organization?
I.K.: These were purely routine difficulties. It was necessary to collect documents, find financing for it, many times something went wrong, then the notary did not come to collect all the documents, something else happened. Therefore, 3 people were finally selected to register the organization. After registration they became participants of the General Meeting, as the entity founders. By the way, today we have even removed the word “founder” from the Charter, because our Charter gets amended in the course of our activities, for the 3-rd or 4-th time, if I’m not mistaken.
I.G.: Is it too often for the lifetime of one organization?
I.K.: No, this is normal. Time brings along new challenges and this just means that we are responding promptly to them. The Charter is the law by which we live. This is like the Constitution for the country, and there are no limits for its improvement.
I.G: You know, in the Ukrainian language there is a miraculous, in my opinion, analogue of the word “improvement” – it’s “pokraschennia” (i.e. betterment). It sounds beautiful, doesn’t it?
I.K.: Yes, thank you, I’ll write it down into my Ukrainian glossary. There is no limit for improvement. If we decide that something needs to be changed to become more efficient in helping us achieve the goal, we will change it and go forward. The ECUO is a living, evolving structure that does not want to get tangled by dogmatic approaches. The world is changing, and we will change and advance together.
I.G.: As for sustainability, which is considered crucial now. In some organizations, there is even a position of sustainability manager. What is your understanding of sustainability for the organization?
I.K.: In the context of the Charter?
I.G.: In the context of the organization’s activities, and the ways in which you and the Board improve the stability of the organization?
I.K.: There is financial sustainability, there is programmatic sustainability, there is a commitment to our cause. I’ll start with the commitment. We are a public organization made up of people living with HIV. Nothing and no one will stop our striving to live. What we do is being done at the bidding of the heart. This is not just a job, this is what we will do even without funding. If we look back at the ECUO history or the professional record of each individual participant, we’ll see that there were lengthy periods time without funding, but people never surrendered, never got downcast, but worked with inexhaustible optimism and intensity.
I.G.: That is, sustainability a personal motivation?
I.K.: Yes. The personal motivation too. It is directly related to the program activities of ECUO for 10 years and that’s what determined the goals and objectives and helped us to achieve them. The sustainability is and will remain crucial. With regard to financial sustainability, our project activities are now funded from several sources. For example, we look forward to further fruitful cooperation with the Global Fund. The new application from the EECA region is a logical buildup on the work that is being carried out in the countries of our region. Yes, this is the first grant of such format for EECA, and there were many difficulties, but thanks to the effective management of the PARTNERSHIP program, we managed to expand the initial scope of work from 5 countries to 11. And this allowed us to intensify activities to provide a continuum of HIV services and strengthen the impact on these processes more than twice. We all have common goals, there are new partners and stakeholders who have been with us for a long time, and we are ready to expand the partnership further with everyone who shares our vision.
I.G.: You have been working in HIV-activism for more than 20 years, and dedicated more than 13 years to the ECUO team. You are familiar with the situation with HIV/AIDS in the EECA region as a whole. How has “access to treatment” changed in 20 years?
I.K.: This time interval may be too long to assess. But if we go back, there was a period when we could not even dream about medications and did not even know about their existence. Then there was no such widespread Internet coverage and information availability, but eventually we began to learn about the existence of medicines, we knew that they had already come into use in Western countries, and we realized that it was almost impossible to access them. You know, how profound was the economic collapse that hit our countries in 90s, and how expensive these medications were. But then the Global Fund made a revolutionary advance, ensuring the first funding of programs, and countries started submitting our applications to the GF, which were drafted quite intuitively, to the best of our abilities then. Further, the first treatment regimens were appointed, first side effects were identified, followed by the development of all our programs, testing, counseling, an incredible number of documents compiled during this period. This was a period of massive effort, going beyond our limits and gaining big victories, the prize of them is life. Even UNAIDS dictionary proves the concept, because it recommends not to use the expression “HIV-positive person”, but rather “a person living with HIV”, which emphasizes the fact that with available treatment HIV is not a death sentence. HIV, as defined by WHO, is a chronic, slow, infectious disease with an unlimited life span.
You know, I always thought that the history of HIV/AIDS is like an indicator paper. It was a measure of many things. The desire to change something, the political will, the level of political compassion in the country towards a certain category of citizens and general population, the people’s capacity for empathy. There was a period of great difficulties, there were media publications shaping an improper approach to the problem itself and largely determining the attitude towards people diagnosed with HIV. Of course, everything has changed very much since that. But the problem of providing quality and affordable access to treatment and to HIV-related services for everyone is still relevant.
Not everyone has access to high quality and available treatment in our region, and this is the work that we have to do, it is enormous. To date, our challenge is to ensure adequate enrolment and retention on treatment for all age groups, from children to the older people. We need to ensure that treatment is comprised of effective drugs with the least side effects, because, as we know, people with zero viral load still die from adverse effects. It’s not HIV killing them, but toxic hepatitis, TB and cardiac diseases, side effects also cause disabilities, because medications invented 20 years ago have more side effects that the newer ones.
I.G.: Seems like 20 years ago the goal was to achieve the right to live with ART, and now it’s already about the quality of treatment, but in most EECA countries many people are not covered by treatment and funding for these programs is declining?
I.K.: In the 90s, when a doctor informed about the diagnosis, he would console patients by saying that the latter will not die right now, they might have another year or two to live. Later, when HIV/AIDS research has advanced, it became known that the disease takes 5-7 years to progress from the moment of infection to the AIDS stage.
I.G.: Is this a life expectancy without treatment or already with ART?
I.K.: It’s 5-7 years without treatment, though it may vary for each different person. Then ARV-therapy began to appear and brought hope. Now we see that there are no time limits. People with HIV live 30-40 years and longer. But at the same time, there are side effects, which result in the interruption of ART, lack of adherence to treatment causing resistance to a drug, and therapy becomes ineffective.
I.G.: And 15-20 years ago the adherence was probably almost 100%?
I.K.: No, I was not.
I.K.: The adherence rate has never been and will not be 100%, but it does not mean that we should not strive for this. There are always people who cannot follow the discipline or do not tolerate therapy. When the medicines just appeared, people had to take pills every 2 hours. For example, at training sessions, when doctors were trained in ART management, they had an experiment. They invited patients in one of the rooms, gave them lozenges, candies and switched on a timer. Then they asked people to show an example of adherence. Every 15 minutes the participants had to take 1 small lozenge with 0% of calories. They were given a checklist in which they were supposed to tick whether they took a lozenge or not. The timer did not have to ring, he just counted the time. And we tried to distract them, by any means: discussions, conversations, questions. And you know, the adherence was achieved in less than 50% of the participants. We said that this experiment will last for 8 hours, but in fact it took only 2 hours. Everyone forgot to comply with the schedule and take medicine. Therefore, absolute adherence can hardly ever be achieved. But we see that the pharmaceutical industry is developing, we will look at what it will offer us, more and more information is being received about new developments that simplify the medicine-taking regime and achievement of full adherence is becoming much more realistic.
I.G.: Is this already a trend in response to the challenges and needs? I mean reducing the periods between pill taking?
I.K.: Now there are new drugs. 1 tablet a day, a week, there is news about new developments allowing to take 1 tablet a month, and the vaccine might be finally invented in the future. However, on the other hand, I have some doubts, because I think it will be a huge dose of chemicals introduced in the body at once (even 1 pill is taken weekly), which can exponentially boost the side effects. But let’s wait and see. We have a strong community, we are numerous and we will advocate for our right to life, the right to a quality life.
I.G.: ECUO is a large regional organization. How do you manage to work remotely through 15 countries in the region?
I.K.: When people know each other well, when people interact, when they have the same goal, distance does not matter.
I.G.: As an activist, where do you get strength for all these years, how to avoid emotional burnout?
I.K.: It’s faith that helped a lot.
When we created the first organization, I wanted to call it “Memento mori / Remember that people are mortal”. But the guys, and it was 1998, said that we won’t be able to foster hope in others with such a gloomy name suggesting that we are doomed. And we named our first organization “Faith”. Faith in life, faith in the future. I think if people were able to truly believe, we could all walk on water and make miracles. Because man has every imaginable and unimaginable ability enshrined in them. And it’s important that there are people who support you and believe in you.
I.G.: Let’s talk about support. Your family lives in Moldova, Chisinau. How often do you see them?
I.K.: We see each other no more than once a month. This is a very scarce opportunity. I’m very disconcerted about this, because the most valuable thing in this world is time. And one should have enough time for work and for those whom they cherish. Thanks to the modern information technologies, we communicate often. Every evening I talk with my son, my wife. Every morning I talk with my daughter, she calls me after her morning exercises and tells me everything about the past day. I manage to talk to my mother less often, and this is my fault. My mother is 85 years old, I understand that I need to communicate with her more often.
I.G.: You have been in Kyiv for more than half a year already, have you managed to see the main sights?
I.K.: I didn’t have a chance so far, but I believe that everything is still ahead. Once I drove along Khreshchatyk. Every day I go to work on foot and enjoy the sights of Andriivsky Descent. It is very different from day to day and still very beautiful.
I.G.: What is your motto?
I.K.: This moment is the best one, always!
I.G.: What is your hobby? Except for work, of course?
I.K.: I had to leave my hobby in Chisinau. I have a doggie; I like to walk with it very much. It’s a great friend. Unfortunately, I could not take it with me to Kyiv. It is our family friend and defender who stays with my son and wife. If in the future an opportunity arises, then I will definitely have a dog here.
I.G.: Are you going to get a new one or bring the dog from Chisinau?
I.K.: I’ll get another friend – after all, there are not many friends (laughs).
I.G.: And the last question: when will HIV be cured?
I.K.: That’s a good question. Although, I believe it will happen in the very near future.
Nowadays many of the most prominent scientists are working on solving this problem. I am sure that we are practically on the verge of discovering a cure. However, there have been many such statements for 20 years, and so far they have remained only statements. We keep waiting and believing ☺
Interview by Inna Gavrilova