Public organization “Community of people living with HIV/AIDS” Russia

STATISTICS According to international experts, Russia has one of the fastest-growing HIVepidemics in the world, and there are already about one million people in Russia living with HIV. The WHO estimates that around people in Russia need to get ARV treatment but currently fewer than people aretaking the treatments. According to international experts, Russia has one of the fastest-growing HIVepidemics in the world, and there are already about one million people in Russia living with HIV. The WHO estimates that around people in Russia need to get ARV treatment but currently fewer than people aretaking the treatments.

Discrimination against PLWHA in Russia Lack of access to treatment Lack of access to treatment Growing discrimination for employment and access to get education at universities. Growing discrimination for employment and access to get education at universities. Prejudices against PLWHA by medical staff, and general population. Prejudices against PLWHA by medical staff, and general population. Low level of HIV/AIDS awareness Low level of HIV/AIDS awareness

Who we are and what we do. Public organisation “Community of people living with HIV/AIDS” Our mission: Improving the quality of life of people living with HIV/AIDS. Improving the quality of life of people living with HIV/AIDS. Advocating for access to treatment for PLWHA Advocating for access to treatment for PLWHA Public awareness campaigns. Public awareness campaigns. HIV-positive community building HIV-positive community building Fighting against diccrimination and for human rights. Fighting against diccrimination and for human rights.

Advocacy Arrange public campaigns, demonstrations, action of protest. Arrange public campaigns, demonstrations, action of protest. Hold negotiations with pharmaceutical companies Hold negotiations with pharmaceutical companies Represent interests of PLWHA on national and international level ( e.g. through CCM membership). Represent interests of PLWHA on national and international level ( e.g. through CCM membership). Develop collaboration with international community Develop collaboration with international community

Actions May 16th, All- Russian action on the International Memorial Candelight Day in Comemoration of People who died of AIDS. ( in over 40 Russian Cities) May 16th, All- Russian action on the International Memorial Candelight Day in Comemoration of People who died of AIDS. ( in over 40 Russian Cities)

On October 12 - Protest. Activists chained themselves to the entrance of the City Hall The protestors pointed out that the medical treatment funding is inadequate. The activists had placard and posters with " Our deaths are a disgrace to you!“ On October 12 - Protest. Activists chained themselves to the entrance of the City Hall The protestors pointed out that the medical treatment funding is inadequate. The activists had placard and posters with " Our deaths are a disgrace to you!“ ( Kaliningrad) ( Kaliningrad)

On November 9 th - Non-sanctioned action at Saint-Petersburg City Hall “Smolny” – where the russian revolution started in With their bodies the activists built a red ribbon. They also brought coffins to express their concerns with a great number of people who died of AIDS as a result of the lack of proper medical treatment. On November 9 th - Non-sanctioned action at Saint-Petersburg City Hall “Smolny” – where the russian revolution started in With their bodies the activists built a red ribbon. They also brought coffins to express their concerns with a great number of people who died of AIDS as a result of the lack of proper medical treatment. (Saint-Petersburg,) (Saint-Petersburg,)

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Which city is next ? Which city is next ?

Conducting Antiviral Clinical Medication Trials in the Russian Way. KEY FACTS As a rule the pharmaceutical companies force patients to sign a contract with them on non-disclosure of the participation in the trials. As a rule the pharmaceutical companies force patients to sign a contract with them on non-disclosure of the participation in the trials. Doctors do not inform the participants about the processof the testing Doctors do not inform the participants about the processof the testing do not provide the participants with the results either. do not provide the participants with the results either. They do not share the information on any side- effects or the consequences of the treatment. They do not share the information on any side- effects or the consequences of the treatment.

Examples ARMENICUM - a medication developed in Armenia. The trials were carried out in 2004 in St. Petersburg. ARMENICUM - a medication developed in Armenia. The trials were carried out in 2004 in St. Petersburg. ARMENIKUM – an immunomodulator on the basis of iodine. ARMENIKUM – an immunomodulator on the basis of iodine.

Patient rights violation Getting access to ARV-treatment only in case of agreement to participate in trials. Getting access to ARV-treatment only in case of agreement to participate in trials. Patients forced to sign a contract stipulating non- disclosure of his participation in the trial and exempting the company of any responsibility for results. Patients forced to sign a contract stipulating non- disclosure of his participation in the trial and exempting the company of any responsibility for results. Denying promised ARV-treatment after trials; Denying promised ARV-treatment after trials; No guaranties for the patients; No guaranties for the patients; No information about possible side-effects of the medication under trials. No information about possible side-effects of the medication under trials.

The medication "VITURID" developed on the basis of mercury The medication "VITURID" developed on the basis of mercury ( quicksilver) 5 years ago and not officialy registred.This medication did not go through trials at all, and besides it is simply dangerous for health. It is still illegaly sold at 500 euro per month claiming 100 per cent success. ( quicksilver) 5 years ago and not officialy registred.This medication did not go through trials at all, and besides it is simply dangerous for health. It is still illegaly sold at 500 euro per month claiming 100 per cent success.

Clinical trials in Russia are: Not transparent. The patients do not get the results of the trials; Not transparent. The patients do not get the results of the trials; The violation of the norms and rules of trials; The violation of the norms and rules of trials; The patient's rights violations; The patient's rights violations; The absence of guarantees to be treated with ARV after the trials. The absence of guarantees to be treated with ARV after the trials.

There is no point in waiting for someone else to lobby for the interests of people living with HIV/AIDS, including drug users. If we do not make a joint effort, nothing will change. There is no point in waiting for someone else to lobby for the interests of people living with HIV/AIDS, including drug users. If we do not make a joint effort, nothing will change.

Contact information PO “Community of PLWHA” Chairman - Mr. Samoilov Dmitry Web: Tel: Address: Russia Moscow P.O. BOX 77