Position of the All-Ukrainian Network of PLWH on AIDS-2018 Conference

International AIDS-2018 conference starts in Amsterdam on July, 23. All-Ukrainian network of PLWH is the largest patient organization in the EECA region. Annually we serve and provide assistance to more than 190 thousand patients, more than 90 thousand of whom are PLHIV.

In the Global Village we planned to present the unique experience of Ukraine -Transition Plan – the first ever step-by-step plan of transition from the donor financing of care and support programs in the field of HIV and tuberculosis to the state budgeting initiated by the Network. This program won by the community and the state with “sweat and blood” is a priority for global donors including PEPFAR program. However, the organizers of AIDS-2018 refused to allocate booth in the Global Village for the largest patient organization and our Transition Plan!

Moreover, the organizing committee did not support our presentations about the unique cases for the region, in particular:

• Successful advocacy aimed to raising government funding for tuberculosis and HIV programs – thanks to our efforts, the amount of funds allocated increased by 150% and 130% respectively
• Creation of eHealth system – an innovative tool of nation-wise scope developed and financed by the patient organization
• Community-based monitoring of regional procurement and the unique electronic tool DoZorro
• transition of substitution therapy financing to state budget, carried out by community forces. In the course of 2018 all patients taking substitution treatment in Ukraine (more than 10 thousand people) will be provided with drugs bought at the expense of public

We are outraged that the conference, which is taking place in Europe and for which the EECA region is a priority in connection with the critical epidemiological situation, refuses to give the floor to the largest patient organization from this region.

Will this stop us? No! We will go to Amsterdam to present information about topics that are uncomfortable for the Organizing Committee. If officials and big pharma are not interested in our topics, this does not mean that they are not interesting for those who fight the disease every day. Several partner organizations have already invited us to speak at their sites and we will accept their invitation!

We know that we are not the only ones who were rejected to present their experience in Amsterdam. Patient organizations have always played an important role in overcoming the HIV epidemic. And we want the patient’s voices to be heard!

Our weapons are publicity and unity. We encourage all our colleagues and partner organizations to tell the world about topics that were not accepted by the organizing committee of the AIDS-2018 Conference. Join us in social networks and publish censored topics under hashtag #StopTheSilenceAIDS2018.