“I am one of you”: Reaching out to people living with HIV and hepatitis C in Ukraine

MSF peer educators with a patient.
UKRAINE 2018 © Aleksandr Glyadyelov/MSF
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Maksym* is a peer health educator working with Doctors Without Borders/Médecins Sans Frontières (MSF) in Mykolaiv, in southern Ukraine, where MSF provides hepatitis C treatment to people living with HIV through an integrated model of care involving free diagnostic tests, a short treatment plan using new oral drugs, and patient education and counseling. This approach has been highly effective, with a cure rate of over 95 percent, according to recent test results.

Psychosocial support for patients plays an essential role in the treatment’s success. People living with HIV and hepatitis C are still highly stigmatized in Ukraine. MSF’s peer educators help patients manage their treatment and cope with challenges that may affect their ability to complete treatment. To date, not one patient has failed to complete treatment as a result of missed doses or visits at MSF’s project in Mykolaiv.

Maksym explains how he draws on his own experiences to connect with patients and make sure they complete their hepatitis C treatment successfully.

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Sometimes when I try to talk to patients about hepatitis C while they are waiting in 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 been cured of hepatitis C. 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.

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 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. 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 until I finally started hepatitis C treatment with new, much more tolerable oral drugs through the MSF program 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 that the whole family 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 wellbeing.

Now, as an MSF peer educator, I share this experience with 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 patients to seek a healthy lifestyle, because it is so important to treatment’s success. Sometimes I even talk with family members about following the program’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 get a divorce than use contraceptives. We had a long, in-depth conversation 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 [antiretroviral] medicines. I tell them that it is possible to be happy and not lonely, even with [HIV] positive status. My wife does not have [HIV], neither do my kids. After discussing this, 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 those people.

*Name changed.