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Russian NGOs and Novaya Gazeta Launched an Online Campaign Against Hepatitis C

On the 22nd of June, 2017 on the Novaya Gazeta website, a special project, entitled Vmeste C devoted to telling about the difficulties of treating…
гепатит С

On the 22nd of June, 2017 on the Novaya Gazeta website, a special project, entitled Vmeste C devoted to telling about the difficulties of treating Hepatitis C in Russia was launched.
In this multimedia project, journalists share the stories of ten patients with Hepatitis C. When they learned of their diagnosis, Hepatitis was an incurable disease and the treatment course for one patient could cost about 1 million rubles, and just a handful of people could be treated on the state budget. Where to go, what to ask, how to get better? The patient community came about to give answers to these questions.
E.V.A.’s Communications Specialist Alexei Lahov, the creator of the first Russian site on hepatitis, Stop, Aleksey Kosheev, and Zoya Kareva, the project coordinator of the community organization United Against Hepatitis shared their stories of treatment, accepting their diagnosis, and communicating with other patients.
Journalists also collected stories from a patients’ club: a network of activists who bring unregistered medication into the country and Russians who travel to Georgia to be treated with new and effective medications as part of a state program.
Illustrations, video clips and photographs were used in the material. On the project’s homepage readers can choose one of the choices of the plot’s development: “give up Russian citizenship” or “be treated with unregistered medication” or “create a miniature of the Ministry of Health” and read information from the answers to questions about the virus.
“After several interviews with representatives from nonprofit organizations that stand up for patients’ rights, it became clear how global the problem is,” shared the project’s mastermind, journalist Alisa Kustikova. “But there is little understanding: in order to bring the depth of the problem to our readers, we found heros who share their stories from the Czech Republic, Georgia, and Russia. The project was done by 20 people and we were supported by three large nonprofit organizations. Vmeste C is a project about cooperation. Patients, journalists, rights defenders, and partners from other media all worked together. Now it’s up to our readers. We are waiting for their reactions, responses, and support. It is for this reason specifically that our project ended with an open letter to the Ministry of Health.”
The petition was composed by the project’s authors and activists from several nonprofit organizations: the community-based organization United Against Hepatitis, the network of activists and specialists that help women with HIV, hepatitis, and other socially significant diseases, E.V.A., the movement for access to treatment for HIV, tuberculosis, and hepatitis C, the Treatment Preparedness Coalition, and Humanitarian Action.
In addition to the adoption of a state program, they demanded that an extra budget be created as well as a federal registry of patients. This will allow it to be determined how many patients need treatment. On World Hepatitis Day, the 28th of July 2017, the signatures that have been collected will be presented to the Russian Federation Ministry of Health and the Minister of Health, Veronika Skvortsova.
The authors of the project were: Alisa Kustikova, journalist of the research department of Novaya Gazeta, Deputy Editor of the Social Technology Incubator Natalia Baranova, and journalist-researcher of the Georgian publication Ifact Tsira Gvasaliya. The project’s producer was Novaya Gazeta’s video and multimedia editor Anna Ignatenko, and artist and designer were illustrator Natalia Yamshikova and art director Nika Pogushina from the self-published publication Baten’ka, da vyi transformer.
According to the data from the viral hepatitis monitoring reference center, Rospotrebnadzor, there are 5.8 million people living with Hepatitis C in Russia. One can contact the virus at the dentist’s, upon getting a tattoo, having a blood transfusion or manicure. The chances of getting cured through the state’s program are very low. Moreover, Russia is one of the few countries that actively uses outdated treatment regimens of pegylated interferon with serious side effects.
Find out more about this project (in Russian)
Alisa Kustikova: +7 961 8098300

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