‘I am one of you. I live with HIV and used to live with hepatitis C’
‘It took several months before I was ready to tell anyone, even my family’
Preliminary test results from a MSF project in Mykolaiv, Ukraine suggests that their treatment approach has been successful in curing hepatitis C in over 95 per cent of former patients, all of whom are infected with HIV.
Sometimes, when I try to talk to patients about hepatitis C while they are waiting in the line to see the doctor, I face a lack of interest. At first.
But once I say the magic phrase – “I am one of you. I live with HIV and used to live with hepatitis C” – I see the change.
People start to listen, carefully, and ask questions. I talk to them as a person who has experienced all the difficulties of treatment and cured hepatitis C (a virus that primarily affects the liver). I managed to do it, and I explain how, using examples from my own life and my own story.
We talk as equals, as peers, and it really works. People open up.
I describe to patients my condition before the hepatitis C treatment. I could barely get out of bed. Just walking to the bathroom was a challenge for me. I was very scared. I also explain that I started feeling better just a month after beginning the treatment, and a significant improvement came after three months. And now, patients see me being so active, running around, working, so they start thinking about their own plans. They see that it is possible to fight hepatitis C, despite their HIV status.
Myself, I found out I had hepatitis C 18 years ago. I discovered it accidentally. I had caught a cold and went to see a general practitioner. He saw a hepatitis C related rash on my body and recommended I get tested. I took his advice, and the hepatitis C diagnosis was confirmed. I went to an infectious disease hospital right away, but they only offered interferon therapy for hepatitis C. Those medicines are very difficult to tolerate. People who had tried the treatment themselves warned me about the terrible side effects. There were no other treatment options at that time.
So, I didn’t do anything.
I was waiting for a miracle, I suppose.
And my condition continued to deteriorate every day until I finally started hepatitis C treatment with new, much more tolerable oral drugs through the MSF programme in Mykolaiv.
I learned my HIV status much later, approximately five years afterwards. I had not suspected anything before. My daughter and son-in-law were sick, so I suggested the whole family to go for a medical check-up. We went, and while the doctors did not find anything seriously wrong with the rest of my family, I was diagnosed with HIV.
It took several months before I was ready to tell anyone, even my family.
Once I finally did, my family supported me. That had an enormously positive effect on my well-being. Now, as an MSF peer educator, I share this experience with the patients, as many are afraid to disclose their HIV-positive status to even their dearest loved ones. Some keep silent for 20 years. I tell them that a family can provide support that cannot be found anywhere else.
Support is extremely important in this situation. As a peer educator, I provide support for those in need throughout the entire treatment course. I am always there to provide any additional clarifications regarding tests or medication, to help them formulate questions for the doctors or nurses or to listen to their complaints. I can even help remind them to take their medication on time each day, just like my family did for me.
I also urge the patients to seek a healthy lifestyle, because it is so important to the success of the treatment. Sometimes, I even talk with family members about following the programme’s recommendations themselves, such as using condoms to prevent reinfection. One time I met a husband who flatly refused to do so, saying that he would rather divorce than use contraceptives. We had long, in-depth conversations in which I explained that, if he loves his wife, he needs to follow the recommendations in order to keep her safe from harm.
Unfortunately many people give up on themselves. They do not have enough motivation. They are disillusioned. It is difficult to keep fighting, especially against both HIV and hepatitis C.
However, it is still possible – hepatitis C is curable, and, with HIV, you can live longer and healthier with ART medicines. I tell them that it is possible to be happy and not lonely, even with a positive status. My wife does not have the status, neither do my kids. After discussing this, the patients start reconsidering their lives and see that a lot of things are still possible for them.
I love what I am doing. I am glad I can help all these people.
– Saturday, December 1st is World Aids Day. Globally, 2.3 million people have HIV and hepatitis C. For HIV positive people, hepatitis C is a leading cause of death, due to a faster progression of the disease and a higher chance to die of cirrhosis and liver cancer without treatment. In Mykolaiv, in the south of Ukraine, Médecins Sans Frontières provides free diagnostic tests, treatment with new drugs, as well as education and counselling services for patients.