Feature story |

Out of darkness: People living with hepatitis C

Photograph by Alexsandr Glyadyelov
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Fighting hepatitis C in Ukraine

Millions of people in Ukraine continue to suffer silently through the pain of hepatitis C. Around five percent of the population live with the disease, many of whom remain untreated due to a historical lack of access to affordable treatment and diagnosis.

Iryna Parakhonko

Iryna Parakhonko and her daughter Rita, Ukraine, 2018.

Iryna Parakhonko is a 52-years-old nurse who graduated from the Kyiv medical post-secondary school. She used to work in different medical facilities in Mykolaiv, including medical emergency hospital. Iryna found out she was infected with hepatitis C in 1999. Since 2003 Iryna has been the president of the charitable organisation ‘Time of Life’ which specialises in supporting people living with HIV. Since 2005, she has been a member of the regional and city coordination councils tackling HIV/AIDS in Mykolaiv. She helps to manage a number of projects which provide social and medical support for people living with HIV, helping them access antiretroviral therapy (ART). Iryna has an adult daughter.

“Over the past 14 years we have been providing social and psychological support for people living with HIV. All patients have free access to ART. We support those who are living with HIV and co-infected with hepatitis C. It is very disappointing and I feel helpless when a healthy person, who has already had ART care and previously had normal immunity, begins to slowly die of cirrhosis caused by hepatitis C. There is almost nothing we can do about it”.

Ihor Skalko

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Ihor Skalko, 53-years-old, graduated from the legal department at the Mechnikov Odessa State University in 1991. He worked for the court, the prosecution office, and later as a businessman. Since 2005, he has been working as a lawyer in the charitable organisation ‘Time of Life’ which specialises in supporting people living with HIV. In most of the cases the organisation works for free for their customers. In 2011, he was granted the Attorney’s certificate.

In 2015, Ihor managed to get onto one of the programmes for the free treatment of hepatitis C. It was a long course and took 48 weeks with strong side effects. He felt really unwell during his treatment and suffered with fever, weakness, shortness of breath and a cough. He also lost weight and was too sick to work. Despite adhering to the difficult treatment, when he received the final test the treatment had not been successful and hepatitis C had not gone away.

”I do not know when I got infected with hepatitis C. I got tested out of curiosity. After testing positive in 2007, I immediately tried to forget about it. Because I knew that there was no access to treatment in Ukraine. When one of the patients from our organisation was dying from liver cirrhosis, I realised that it might be hepatitis C. That reminded me of my diagnosis and I thought that I could be next. But again, I tried to forget about it because I could not afford the treatment.”

Kostiantyn Dymynchuk

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Kostiantyn Dymynchuk, 47-years-old, graduated from college and was trained in the profession of metal worker and operator of multiple types of equipment. However, his life took a different path. He started using drugs and then went to prison.

He found God in 2008 and became committed to the church ‘Primireniye s Bogom’ (one of Baptist churches in Mykolaiv). Now he preaches in penal facilities and works in construction, mounting plastic insulating glass units. He has three grandchildren. He thinks he contracted hepatitis C in 1996. He was formally diagnosed in 2008. Since then he started to seriously look after his health.

Olena Melnikova

Olena Melnikova, 42-years-old, has been the acting director at the Mykolaiv department of the Ukrainian charitable organisation, ‘All-Ukrainian network of people living with HIV’, since its foundation in 2003.

She is running a project for the Global Fund (partnership organisation designed to accelerate the end of AIDS, tuberculosis and malaria). Her HIV status was confirmed in 1999, and she was diagnosed with hepatitis C in 2007. She has a daughter and a granddaughter.

Olena Melnikova and her boyfriend Aleksandr, Ukraine, 2018.

“When the first free programmes started to be implemented, it was very difficult to get selected. What scared people away was the difficulty of the treatment with all its terrible side effects. We were afraid of both hepatitis C and the treatment itself, as it was poorly tolerated. A whole year of side effects, can you imagine how challenging that is for someone?

In those moments, you need a lot of support to get through it all. You also need a substantial amount of savings, as there is a risk that you will not be able to work and earn a living. Diagnostics of hepatitis C are another issue as there are no rapid tests available. Diagnostics are very expensive, not everyone can afford them.”

Viktoriya Kuznetsova

Viktoriya Kuznetsova, getting ready for national independent tests, Ukraine, 2018.

Viktoriya Kuznetsova, 45-years-old, has been a social worker with the charitable organisation ‘Time of Life’ which specialises in supporting people living with HIV since 2014.

Viktoriya has previously used drugs and served time in prison. Her HIV status was confirmed in 1996 and she was diagnosed with hepatitis C in 2001.

Viktoriya leads an active lifestyle, despite receiving hepatitis C treatment from the MSF programme. She started evening classes to prepare for national tests, as she wanted to go to university and get a degree. She also had a full-time job. Since last year Viktoriya worked hard in her studies and managed to pass the national tests. She is applying for the department of sociology and psychology at the Suhomlynskyi Mykolaiv National University. Despite the medications she was taking, Viktoriya found the strength to get on with her life.

MSF peer educator Andrii Konovalov, Ukraine, 2018.

Andrii Konovalov

Andrii Konovalov, 48-years-old, worked as a military officer until 1994. He has two military degrees. In 1995 he found out that he was HIV positive. He was 24-years-old at the time and for the next 10 years Andrii was ready to die at any moment.

A meeting with an MSF social worker in 1999 radically changed Andrii’s attitude towards his life. Back then, MSF was implementing a medical and social support programme for people living with HIV/AIDS in the Mykolaiv region.

He co-founded a charitable organisation ‘Time of Life’ which specialises in supporting people living with HIV and the Mykolaiv branch of ‘All-Ukrainian network of people living with HIV’.

Andrii received treatment for hepatitis C in a free treatment programme in 2015. However, the treatment was very difficult because of the side effects. Now he uses his experience of battling the disease to help other patients in the MSF programme, where he has been working as a peer educator since October 2017.

MSF Patient Support, Education & Counselling (PSEC) room, Ukraine, 2018.

“Living with HIV, I didn’t pay any attention to the problem of hepatitis C. It was only after the death of my cousin from liver fibrosis that I became interested and did some research on the development of hepatitis C in the body. The treatment in the programme was very difficult. I could hardly believe that there were such side effects. I knew that some people were giving up and stopping the treatment but it seemed to me that they didn’t have enough motivation and gave up because of psychosomatic issues. However after a while I understood that all those stories about side effects were true. But the expensive treatment could not be given up. There were days I felt so weak that I could not go outside and or barely get out of bed. I also developed psychological issues such as aggressive behaviour, nervousness and mood swings.

The MSF programme uses new drugs which do not have such severe side effects. Patients can tolerate this treatment much better. But, they still need support and I do my best as a peer educator to provide it. I can tell that people trust me and I see how important it is to support a person during the tough times in life”.

*Andrii is an MSF peer educator, not a patient. However, he has a strong story to tell, having lived with hepatitis C and overcome it.