PLHIV as “watchdogs” spreads through region

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Julia Dragunova reports on an initiative developed by ITPC in Russia that is now catching on throughout the region – helping communities and countries to prepare for when the global fund withdraws their support for HIV treatment. 
We in ITPCru wish to share news about one of the most successful activist-led initiatives, which is now spreading from Russia to other Russian speaking countries in Eastern Europe and Central Asia (EECA).  The initiative is spreading because of its proven efficiency and value for people living with HIV (PLHIV). The initiative is a web-based tool PEREBOI (the Russian word for STOCK-OUTS) and can be found here

This is the form to be filled in.
This is the form to be filled in.

How it works

It is a very simple, non-commercial website (in Russian only, so far), where people living with HIV can leave messages about violations related to their treatment or testing, such as stock outs of antiretrovirals (ARVs), viral load and CD4 kits and commodities. An example of the electronic form to be filled is here to the left.
Once a message is left, a professional from the PLHIV community responds. The consultant either explains what the patient can do about the revealed violation. Or in some cases will take an advocacy action on behalf of the patient if they cannot deal with the issue themselves. Traditional methods used to handle violations include official letters and requests to government institutions, and brief information about PLHIV rights and laws regulating ARV treatment and testing provision in the country. Importantly, this tool is not a “Complaint Book”, but rather an instrument to monitor the situation and to motivate patients to actions.
It is also important to mention that activists support this resource on a voluntary basis. The government should cover the costs of all ARVs and test kits in Russia. The HIV community in Russia started this initiative five years ago. The activists wanted to find a new resource that could fulfill two important functions:

  1. To register specific cases of violation of rights for further advocacy;
  2. To help PLWH with access to treatment.

Promotion about the tool

Information about this website is widely shared using a range of tools, including the media, websites of NGOs, email lists and groups, as well stickers left by people living with HIV on the walls of institutions distributing ARVs in the country. An example of stickers & cards is in the main photo above. Translated these read: “One pill replaced by two? Leave a message at WWW.PEREBOI.RU” and “Testing denied? Leave a message at WWW.PEREBOI.RU”.

Why it is needed

During the next few years, the Global Fund will stop funding most in the countries of the EECA region. This means that the responsibilities for providing ARVT and test kits to PLHIV will be transferred to the governments, and other countries will start to work with procurement systems similar to the system used in Russia. The EECA community thinks that it is good for most countries, as it is an opportunity to build their own procurement systems. However, the transition period from one system to another may be challenging. For example, most countries face difficulties with registering all the necessary ARVs and drugs for co-infections, and in this case it is not clear how the procurement mechanism will work.
To help communities prepare ITPCru decided to spread the model of the Russian advocacy tool to other EECA countries, and to develop three new similar websites adapted to the specific conditions of each country. The first countries include Belarus in operation), Moldova and Kazakhstan (currently under development). The Russian community of activists, fully supported by ITPCru, is keen to share all of our resources in order that PLHVIV from these countries are able to advocate for full and high-quality access to HIV treatment.
As demonstrated time and again, the initiatives managed by community activists can be very useful for people affected by diseases. These initiatives influence the work of the entire system and contribute to improving access to treatment.
For more information contact Julia Dragunova, Programme Officer, ITPCru. E-mail: