Author: Anastasia Petrova, Russia
“Medicines for the treatment of HIV, hepatitis C, and tuberculosis are provided free of charge to all needy patients in Russia.” This phrase is the first thing we see on Pereboi.ru main page – the resource where people living with HIV in Russia can tell their stories about how they were refused treatment.
Pereboi.ru is one of the projects of the Patient Control – a public movement whose members are people living with HIV and other socially significant diseases, as well as their supporters. The movement has existed for seven years in Russia. The initiative group, not being an organization or legal entity, has grown into a professional community of patients who have risen to defend their rights.
In addition to direct actions, activists of the Patient Control monitor government procurement of antiretroviral therapy (ART), write complaints and make appeals to public authorities. Representatives of the community also work with pharmaceutical companies: one of the main obstacles to treatment is inflated prices for medicines.
Founded in autumn 2010, the movement’s goal is to ensure effective control of the provision of high-grade medical care and the improvement of quality of life for HIV positive people. Activists say that any person sharing their views can join them. The main concern on which activists are working is the disruptions in medical supplies for people living with HIV, hepatitis and tuberculosis in Russia.
Fighting with supply disruptions
“For more than six years there have been interruptions in medical supplies for the treatment of HIV/AIDS in Russia. Life-saving medicines, that have to be taken strictly by the clock and in a certain order are partially or completely lacking in AIDS centres,” activists are saying.
This situation is interconnected with repeated changes in the system of procurement of medicines for people living with HIV. The latest change is the transition to a centralized system in 2017. Before that, the medicines in regions were bought according to special schedules, and now the Ministry of Health of the Russian Federation is the responsible party. These changes have led to the slippages in the procurement schedule and serious supply disruptions this year.
At the moment, supply disruptions of medicines happen almost everywhere throughout the country. People living in different regions of Russia such as Nizhny Novgorod, Norilsk, Tomsk, Kostroma write messages to pereboi.ru almost every day. Only in 2016, the activists counted appeals from more than 30 cities. These cities are also situated in such prosperous areas as Moscow, the Leningrad and Moscow regions.
Last summer the activists of Patient Control facilitated the situation with interruptions in treatment of children and pregnant women in the AIDS centre near Moscow. 30 patients signed the petition after which the Federal Service for Surveillance in Healthcare conducted an unscheduled inspection at the AIDS centre near Moscow and in the regional Ministry of Health office.
In order to avoid the following situations, activists get updated on the formation of purchases for 2018 by raising the issue at a high authority level. On August 14, 2016 there was a meeting of patients with representatives of the Federal Service for Surveillance in Health Care and the Ministry of Health of the Russian Federation. The government informed activists about the expected additional financing in the amount of 4 billion rubles this year and the planned annual increase by 1.5 billion rubles in the budget for the purchase of medicines. However, according to the representatives of the movement this is not enough to solve the problem completely.
Side effects from the low-quality medicines is another issue patients are talking about. Due to the strong health issues that arise in response to therapy, people often abandon the existing treatment. A short list of the issues they face includes rash, kidney problems, lipodystrophy. It is difficult to get treatment replacement afterwards if the therapy scheme was changed according to medical or pseudo medical indications, because formally the therapy is still being provided.
Day prior to the meeting of the Commission on Vital and Essential Drugs (VED) on September 4, 2017 in Moscow Patient Control representatives addressed the Minister of Health of the Russian Federation. The request was to include VED in the list of contemporary drugs in 2018 for the treatment of HIV-infection and chronic hepatitis C. Following the meeting, the Commission made a decision to add six medications, four of them were also in the activists’ list. The Commission included two medicines for HIV infection treatment: dolutegravir, raltegravir for children and two for hepatitis C: dasabuvir/ombitasvir/paritaprevir/ritonavir and daclatasvir.
Activists are also working on the ways to achieve patient feedback in cases when ART was proven ineffective or had side effects. Patients along with the physicians will now be able to fill out an online form on the Federal Service for Surveillance in Health Care. This will help to improve the quality of medication control.
Treatment as prevention
The internationally recognized principle of treatment as prevention is one of the most effective and yet most underestimated ways to prevent the spread of HIV infection in Russia. The number of HIV infections in our country keeps growing and thus patients’ collaboration is extremely important.
The Patient Control movement is one of the communities in the Eastern European and Central Asian (EECA) countries dealing at a highly professional level with access to therapy of people living with HIV. SIMONA+ project is one of Patient Control initiatives aimed at systemic problem solving. This project studies access to medical and non-medical services for people living with HIV, as well as reacts to violations of patients’ rights by direct actions, press conferences and round-table discussions. Nowadays, SIMONA+ covers more than 13 entities of the Russian Federation. Its main goal is to improve the quality of HIV treatment and diagnostics, as well as to increase adherence among the representatives of key groups. Apart from serving patients’ interests, the project tries to minimize HIV spread among the general population.
The Patient Control projects are a community response to the epidemic. These projects consider the needs of people living with HIV and facilitate cooperation between specialists working in the AIDS control field. These merits have already been recognized once: at the 19th International AIDS Conference in Washington in 2012, the Patient Control initiative group was awarded the Red Ribbon Award for outstanding work concerning the AIDS epidemic. Promotion of such initiatives is declared as one of the leading goals for the 22nd International AIDS Conference, which will take place in Amsterdam next July. Representatives of the Patient Control movement plan to submit the report on their work in 2016-2018 to AIDS 2018.