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Living with Hepatitis C

 

Author: Irakli Imnaishvili

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I underwent an initial interferon therapy course in 2007. Although it was administered under the supervision of specialists from the London Liver Centre, the treatment failed to eliminate the virus.

After the treatment, the disease became more aggressive. The rate of liver scarring accelerated and the viral load increased.

At that point, a new medication was expected to appear on the market in five years’ time. My aim was to survive the next five years and then try the new medication.

The prospect of slowing down the disease without medication seemed unimaginable to me.

At the same time, I was well aware of the reality which existed in Georgia back then: antiviral therapy was incredibly expensive and only 1% of patients were able to afford it. Consequently, people were left hopeless in the face of the disease. Although I was living in Britain at the time and I did not face the same financial barriers, I was still in a similarly hopeless condition psychologically.

That was the unfavorable situation I was facing when my wife learned about the patients’ workshop “Life with Hepatitis C Diagnosis.” Initially, I was skeptical about the workshop, seeing it as something like a gathering of alcoholics. Nevertheless, I registered and showed up at the first meeting with a cynical attitude. However – and let me be quite clear about this – the five hours I spent there changed my life.

The workshop’s major effect was the way in which it changed my attitude: as myths after myth about the disease was debunked, I became extremely confident and I felt ready to act – a plan of action was quickly devised.

Along with my wife, Natia Abramia (who has hugely contributed to my healing) I started to transform my lifestyle step-by-step. It was an amazing period. As the available chemical treatments had failed to beat the virus, controlling my regime and diet seemed to be the only remaining option for slowing down the progress of this evil disease. Moreover, this treatment method was simple enough that anyone could follow it, regardless of their income level or social status.

Gradually the results became observable and, at a certain stage, Natia and I realized that this information needed to be disseminated in Georgia: I had to share this method with those who could benefit from it. At the time of my first treatment Natia wanted to start a blog, but I was not ready for that. There were three reasons that kept me from going public about my health condition: 1. I was afraid of the stigma. People would think that I am a drug abuser and it would then be impossible to convince anyone otherwise. 2. My parents would also read that blog and would suffer from learning what a hellish experience I had gone through with the interferon therapy. 3. As the treatment was extremely expensive and, hence, unaffordable for 99% of those who could benefit from it, I saw no sense in describing it.

But I did believe that the information about this second method – the slowdown of the disease by means of regime and diet – would be necessary for many and even vital for some.

Therefore, Natia and I got down to work.

In 2010, I founded a union of patients diagnosed with Hepatitis C and shortly thereafter launched the first project.

Europe Foundation was our main donor. Without the Foundation’s timely involvement, it would have been impossible to have started the campaign when we did. Along with providing the funding, Europe Foundation assisted us in handling the project.

We were a newly-established organization when we first applied to the “open call”, and the ideas suggested by the Foundation proved to be very effective. We broke up the entire project into several stages and this helped us design and implement a large-scale project without problems.

The project pursued two goals: the minimum goal of sharing my experience with other Hepatitis C-diagnosed people and their families; and the maximum goal of making this treatment universally available to all segments of the population.

We started to work in several directions simultaneously.

The Georgian reality was severe: locally, we faced a total information vacuum concerning the disease; online information is scarce and tends to be misleading; and many local patients feel a sense of hopelessness.

To counteract these negatives, we first created informational products – a helpline, a webpage and a school for patients.

The support and encouragement we received from those around us was extraordinary, and, to save funds, I turned my Tbilisi apartment into an office. All the necessary logistics were sorted out within a span of three days. My friends donated office furniture; and we gathered the needed resources at an incredible rate and then got down to work, filling the information vacuum. All the products we created were made available to the target audience for free.

In 2010, because of the high price of treatment, Hepatitis was not a priority for the Health Care Ministry. At that time, I had a meeting with the then Health Care Minister Chiaberashvili, but this meeting convinced me once again that the government had no intention of taking any steps to tackle this problem. The indifference of the state was the biggest challenge for me to deal with. I knew full well that diet and regime were far from enough to cure Hepatitis and there was still little to no hopes of making the treatment available.

 A large number of patients were skeptical about the prospect of slowing down the disease through diet and regime alone; they preferred to wait for an alternative treatment. Against such a backdrop, I felt sometimes as if I was fighting windmills; there was a need for a concrete action plan. After a new political party came to power in Georgia, a Hepatitis elimination program was started in the penitentiary system. I met with Health Care Minister Davit Sergeenko and a fruitful cooperation began.

One interesting experience was the production of talk-shows. We got support from the owner and staff of the Imedi TV company. The owners of Maestro and Channel 9 also joined the cause.

Overall, the three TV channels engaged in the project simultaneously launched discussions about Hepatitis.

That proved to be the breakthrough in overcoming the lack of information. I can hardly recall any such project undertaken either before that or afterwards – all three TV channels rallied around the issue.

When the national program for the elimination of Hepatitis was put into action, our lawyer closely cooperated with the specialists in this field in order to ensure the delivery of treatment first to those who badly needed it and not to those who had influential acquaintances at the Ministry.

When the national program for the elimination of Hepatitis was put into action, our lawyer closely cooperated with the specialists in this field in order to ensure the delivery of treatment first to those who badly needed it and not to those who had influential acquaintances at the Ministry.

The results observed today are notable – despite the suspension of operational actions, a huge amount of work has been carried out. Public discussion about this disease has broadened with others becoming engaged in it too; the stigma has abated and patients no longer fear public opinion. The level of public awareness has significantly increased as well.

As far as I’m concerned, not so long ago I could hardly have imagined that a high-quality, Hepatitis C treatment would ever be delivered in Georgia, even more, for free and to all patients.

 

Photos by: Irakli Shalamberidze 

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