EECA CAB: new opportunities and prolific partnership

The 11-th meeting of representatives of the community of key population groups, international organizations, experts and medical specialists from the EECA region countries took place in Kyiv at the session of the Community Advisory Board of Eastern Europe and Central Asia – EECA CAB, where the updated concept of the platform development was discussed.

Vladimir Zhovtyak, President of the East Europe and Central Asia Association of People Living with HIV (ECUO PLWH), opened the meeting:

“I am glad to welcome all colleagues, partners, new and long-time participants − high level specialists, at this first constituent and the eleventh training session of the EECA CAB. The European AIDS Treatment Group (EATG), which supports our vision on access to innovative medicines in the EECA countries, is actively participating in the meeting together with us. Some time ago we have signed a memorandum with EATG on cooperation and joining our efforts on the EECA CAB development. We are open to everyone. I am pleased that experts from 15 countries of the region, the Medical Patent Pool, Itpcru, European Association of PWID are taking part in the CAB. The representatives of Polish and German universities writing a scientific work on the history of the HIV/AIDS epidemic also joined us today. They describe the chronology of the actions to combat the HIV/AIDS epidemic, generating mathematical models. After all, the best advocacy practices will be useful to achieve the set goals even now. Those practices, mechanisms, methods, platforms that have helped the community of patients over 30 years to unite and make governments all over the world draw attention to the critical situation, the HIV/AIDS problems in our country will be described in scientific work and mathematically calculated. We are striving to create the world where we would like to live. I am sure that with the reload of EECA CAB, new opportunities for patients in our region will arise”.

It was mentioned at the meeting that while the concept is undergoing modifications, the mission of the EECA CAB remains unchanged since 2009: to ensure equal access to treatment of HIV, hepatitis, TB and concomitant illnesses for all patients in the EECA region.

Liudmila Untura, secretary of EECA CAB:

“During 8 years of the EECA Community Advisory Board work we managed to set up a constructive dialogue between patients, NGOs and pharmaceutical companies. Experience sharing, expert advice, discussion on the continuum of services, mobilization, community development, strategic advocacy − all these activities have become a powerful catalyst for improving access to treatment in our countries. Now we are elaborating on further development of the platform in the context of the four key goals implementation. The first one is to strengthen the role of the patient community in the pricing and procurement processes in the EECA countries, as well as in the processes involved in conducting clinical trials. The second is to create a regional resource center as a knowledge base in collaboration with the Minus Virus platform (mv.ecuo.org). The third is to provide a platform for direct dialogue at the regional level not only between the community of patients and representatives of pharmaceutical industry offices, but also for the regulatory authorities of our region. The fourth goal is to represent the interests of the community of patients at the global level to advocate access to treatment”.

Experts from Armenia, Azerbaijan, Belarus, Georgia, Kazakhstan, Kyrgyzstan, Latvia, Lithuania, Moldova, Russia, Tajikistan, Ukraine, Estonia, as well as representatives of the European Aids Treatment Group (EATG), the Medical Patent Pool, lawyers and researchers from European institutions who study HIV/AIDS policies and approaches participated in the EECA CAB. The event showcased the latest information on access, approaches to the treatment of HIV and hepatitis in EECA countries, presentations on new pharmacological developments and studies, and a discussion of the Concept and strategy for the development of the updated EECA CAB platform.

A separate discussion during the meeting was dedicated to the surveys on the assessment of the availability of innovative ARVs in Moldova, Kyrgyzstan and Lithuania. Thus, Andrey Rudanov, expert of the law firm “Drakšas, Mekionis, Smirnov & Partners”, chief specialist of the natural sciences division, presented a report on the “Situation and assessment of the availability level of modern ARV drugs in Lithuania (legal framework, government procurement and intellectual property protection)”. Aybar Sultangaziev, director of the “Partnership Network” Association and the leader of the PARTNER program organizations consortium, shared information on the analysis of mechanisms for ensuring the availability of medicines in the Kyrgyz Republic. Also, Liudmila Untura, the expert on HIV/AIDS in Moldova, delivered a presentation “Ensuring the availability of ARV therapy in the Republic of Moldova. Opportunities and barriers to expand access to modern ARV drugs in the course of transition from international support to the state budget funding”. The results of these surveys will be published on the Minus Virus platform (mv.ecuo.org) separately.

It is noteworthy that access to antiretroviral treatment in the EECA region is as low as 28%, being one of the poorest indicators in the world. In recent years, there has been a steady increase in the treatment programs uptake in some EECA countries, but it is still necessary to join all possible efforts to ensure coverage of all PLWH. This is especially true given the latest recommendations of the World Health Organization (WHO) in the field of HIV and hepatitis treatment, according to which it is recommended to start treatment as early as possible (“test and treat” approach) considering health benefits. In the context of TB, one of the key issues is the proliferation of multidrug-resistant tuberculosis (MDR-TB) and the need to provide patients with second-line drugs, many of which are expensive and still not registered in some EECA countries.

Different opinions were expressed in the discussion about priorities in countries and further activities:

David Ananiashvili, Director of the Georgian Group Plus, Representative of the ECUO PLWH, said:

“I would like to describe the situation in Georgia. When it comes to universal access to treatment and quality of life for all PLWH, it is important to pay attention to ensuring access to state insurance. After all, in addition to HIV and co-infections (TB and HCV), we are also susceptible to other diseases that are common in PLWH. First of all, it’s a problem with the thyroid gland, diabetes, oncology, TB, surgical interventions, and so on”.

Vladimir Mayanovsky, chairman of the All-Russian Association of PLWH and a representative of the ECUO PLWH in Russia, said:

“Of course, co-infection and quality of life are very important. But which of the EECA countries has ensured universal access to ARVs for all who need it? In Lithuania and Georgia, full access shall be ensured by 2018, but so far we can only dream of universal access in other countries. In Russia there are 1.2 million of PLWH, according to the latest estimate, many of whom need treatment. Access to ART medications for PLWH in the Russian Federation is very important”.

Igor Kilchevskyi, Representative of the ECUO PLWH in the Republic of Moldova:

“Currently, the HIV treatment protocols are being updated in many countries of the region. In Moldova, the protocols have been updated as the result of extensive consultations with leading experts all over the country, international experts and based on modern bibliography of the European Protocols. The new protocols in Moldova envisage an important positive effect: they provide qualitative (optimal) standard for the patients regardless of on which treatment line they are. In addition, innovative therapies are included in the treatment regimen. From its side the PLWH community, as an equal partner, makes every effort to ensure coordination and interaction with all non-governmental organizations involved in the process of counteracting HIV, TB, hepatitis, as well as with government agencies and international partners in order to provide universal access to high-quality medicines at affordable prices, both for HIV and for all concomitant diseases”.

Sevar Kamilova, director of Guli Surh, and a representative of the ECUO PLWH in Tajikistan:

“If we are talking about the quality of treatment, Tajikistan has no problems with access to ARV treatment. Our problem is different, when the medications are available, but the uptake of people on treatment is insufficient. Tajikistan has no access to innovative drugs, no support for the treatment of hepatitis and other co-infections, no such government programs are available. I can summarize, that access to HIV treatment is available, the Global Fund provides ART, but the quality of life is not properly addressed”.

Aybar Sultangaziev, Head of the “Partner Network” Association and the leader of the consortium of the KAP organizations of the regional PARTNERSHIP program in Kyrgyzstan:

“I participated in many European conferences and was struck by what problems are actually in the focus of attention in the Europe. In our country, unlike in Europe, mere survival is the first and foremost issue. Yes, Kyrgyzstan has access to ART, as long as the Global Fund is there. In this context, we need to determine, how to ensure the three levels of access to treatment for the region. The first question is the issue of survival and access to treatment for ART, hepatitis, and TB. The second is the quality of life. The third level is the maintenance of all services for KAP, developed with the support of the Global Fund”.

Svetlana Kulshis, head of the Demetra Association and a representative of the ECUO PLWH in Lithuania:

“Access to innovative drugs is available in Lithuania, but treatment is prescribed when the patient’s CD4 count is as low as 350 cells/mcl, notwithstanding that Latvia and Lithuania are European Union countries. We have a considerable gap between the number of diagnosed PLWH and those who actually receive services and are integrated into the health care system”.

Summing up the discussions, it is important to note that currently the treatment provision mechanisms and lists of medicines are changing in the EECA countries. In many countries, the transition from donor to state financing is underway or expected in the next 2-3 years. Some countries, on the other hand, switch from procurement by national authorities to procurement through international agencies. The negotiations on forming the single pharmaceuticals market within the Customs Union (Armenia, Belarus, Kazakhstan, Kyrgyzstan, Russia) approached the final stage. In some countries the importation substitution policy exists, allowing the national drug manufacturers to benefit from certain preferences. All these factors and processes need to be closely monitored by patient organizations at the national level. And the EECA CAB, as a mechanism for coordinating advocacy efforts in this area at the level of Eastern Europe and Central Asia, will play a special role in the process.

Thus, according to the results of the first constituent and the eleventh training meeting of the EECA CAB experts, preparation of the strategic plan for 2018-2020 is underway. The EECA CAB team formed a consolidated position on a number of key aspects in increasing the coverage of patients with innovative care. This position will be updated on an ongoing basis, taking into account the changing context.
The next EECA CAB meeting is scheduled for March 2018.

As previously reported, since August 2017 ECUO PLWH is fully coordinating the activities and organization of the EECA CAB meeting.