A journey from invisible to inexhaustible
by Paata Sabelashvili and Konstantine Rukhadze
I have always known somebody who was living with the Hepatitis C virus (HCV). So many people I knew. People would rarely talk about this, not necessarily because of stigma, but rather out of apathy. "Everyone has got it", they would say. It seemed no one really cared.
I have joined the Georgian Harm Reduction Network, which is implementing a project with the support of the OSGF. In the summer of 2011, a group of activists gathered at the project's advocacy summer school in a pretty place by the Black Sea. This was the point when we realized that we cannot afford to not care any longer.
We learned that an enzyme called interferon has existed for a long time, and that it does not cost much. And there are pharmaceutical companies who patented the manufacture of this enzyme and now charge a fortune for this life-saving treatment. They have secured enormous profits, charging around $15,000 USD for a treatment course.
And because this amount is much higher than annual GDP per capita in the country, guess how many people could afford this life saving-treatment over the course of the last 10 years in Georgia? - 1% of all people living with HCV.
We got angry. But most importantly we learned what to do, and how to act on this problem. We joined forces immediately after the advocacy summer school and put together a campaign, the first of its kind in Georgia.
This campaign has evolved around the idea that HCV is not concentrated mostly in one or another high risk population, but rather affects everyone. This gave us a great platform to raise public awareness and get officials to publicly recognize this problem. We have followed up consistently. In the summer of 2012 we launched the second part of the campaign, utilizing knowledge and lessons learned from previous years.
We have come up with a three-year strategy and revised campaign plan as a result of a strategy meeting that was also supported by OSGF. In 2012 we focused on taking concrete steps to address this problem.
Thus, we have started a waiting list of people who are ready to start treatment at any time. This has demonstrated preparedness, mobilization and visibility of the patient community to the decision makers. As a result of our efforts, a special working group was created, with state authorities, civil society and patient community representatives on board. We are now translating campaign slogans into concrete actions.
Most importantly, we have learned that talking solely in terms of numbers - such as the 200,000 people who suffer from HCV, making up 6.7% of the population--is not always the right strategy. We also need to talk in terms of people. And when we found a couple of courageous and enthusiastic activists willing to talk publicly about their problems, we felt that this is the way to proceed.
Under my Access to Medicines Fellowship, which is also supported by the Foundation, I have learned how to bring together activists, decision makers and professionals to work for the common goal.
Here is what our fellow activist Konstantine Rukhadze has to share:
"I have lived with HCV since 2001. In the beginning, I felt incapable of dealing with this problem, until I and my friends decided to found the organization Hepa Plus and join the Georgian Harm Reduction Network. No one seemed to be interested in supporting our hard path to victory, except for OSGF, who gave us courage, support and skills to advocate our own vital needs.
"We have staged street actions, undergone trainings, engaged in discussions, raised public awareness and eventually placed HCV on the map of Georgian healthcare. Decision makers have widely recognized this problem, but would not commit to solve it, because treatment is costly. We strategized further around this issue and made it explicit that ‘we need treatment now'.
"And it worked. We are now on the board of a team that is charged with developing a national treatment program. There has been enormous progress over last two years thanks to the support coming from the Foundation. But there is much more to accomplish.
And the further we go, and the more we learn - the opportunities seem inexhaustible.
We have been on this road for two years now. As we look ahead, the challenges only increase. But the good thing about this journey is that when you do it you feel the power of activism. You feel it immediately, you hear it on the TV, when listening to the conversation of strangers, when people approach you during street actions, when someone phones you on a private mobile eager to collect useful information.
It is also a painful journey because you cannot offer much to one who is in immediate need. However, the further you travel, the more you can.