public organization “community of people living with hiv/aids” russia
TRANSCRIPT
Public organization Public organization “Community of people “Community of people living with HIV/AIDS” living with HIV/AIDS” Russia Russia
STATISTICSSTATISTICS
According to international experts, According to international experts, Russia has one of the fastest-growing Russia has one of the fastest-growing HIVepidemics in the world, and there HIVepidemics in the world, and there are already about one million people are already about one million people in Russia living with HIV. The WHO in Russia living with HIV. The WHO estimates that around 50 000 people estimates that around 50 000 people in Russia need to get ARV treatment in Russia need to get ARV treatment but currently fewer than 1 000 but currently fewer than 1 000 people aretaking the treatments.people aretaking the treatments.
Discrimination against PLWHA Discrimination against PLWHA in Russia in Russia
Lack of access to treatmentLack of access to treatment Growing discrimination for Growing discrimination for
employment and access to get employment and access to get education at universities.education at universities.
Prejudices against PLWHA by Prejudices against PLWHA by medical staff, and general medical staff, and general population.population.
Low level of HIV/AIDS awareness Low level of HIV/AIDS awareness
Who we are and what we Who we are and what we do.do.
Public organisationPublic organisation““Community of people living with HIV/AIDS”Community of people living with HIV/AIDS”
Our mission: Our mission: Improving the quality of life of people living Improving the quality of life of people living
with HIV/AIDS.with HIV/AIDS. Advocating for access to treatment for PLWHAAdvocating for access to treatment for PLWHA Public awareness campaigns.Public awareness campaigns. HIV-positive community buildingHIV-positive community building Fighting against diccrimination and for human Fighting against diccrimination and for human
rights. rights.
AdvocacyAdvocacy Arrange public campaigns, Arrange public campaigns,
demonstrations, action of protest. demonstrations, action of protest. Hold negotiations with Hold negotiations with
pharmaceutical companiespharmaceutical companies Represent interests of PLWHA on Represent interests of PLWHA on
national and international level national and international level ( e.g. through CCM membership) .( e.g. through CCM membership) .
Develop collaboration with Develop collaboration with international community international community
ActionsActions
May 16th, 2004 - All- Russian May 16th, 2004 - All- Russian action on the International action on the International Memorial Candelight Day in Memorial Candelight Day in Comemoration of People who died Comemoration of People who died of AIDS.of AIDS. ( in over 40 Russian Cities)( in over 40 Russian Cities)
On October 12 - Protest.On October 12 - Protest. Activists Activists chained themselves to the entrance chained themselves to the entrance of the City Hall The protestors of the City Hall The protestors pointed out that the medical pointed out that the medical treatment funding is inadequate. treatment funding is inadequate. The activists had placard and The activists had placard and posters with " Our deaths are a posters with " Our deaths are a disgrace to you!“disgrace to you!“
( Kaliningrad)( Kaliningrad)
On November 9On November 9thth - Non-sanctioned - Non-sanctioned action at Saint-Petersburg City Hall action at Saint-Petersburg City Hall “Smolny” – where the russian “Smolny” – where the russian revolution started in 1917. With their revolution started in 1917. With their bodies the activists built a red ribbon . bodies the activists built a red ribbon . They also brought coffins to express They also brought coffins to express their concerns with a great number of their concerns with a great number of people who died of AIDS as a result of people who died of AIDS as a result of the lack of proper medical treatment.the lack of proper medical treatment.
(Saint-Petersburg,)(Saint-Petersburg,)
Наша миссия:Наша миссия:
Which city is Which city is next ?next ?
Conducting Antiviral Clinical Medication Conducting Antiviral Clinical Medication
Trials in the Russian Way.Trials in the Russian Way.
KEY FACTSKEY FACTS As a rule the pharmaceutical companies force As a rule the pharmaceutical companies force
patients to sign a contract with them on non-patients to sign a contract with them on non-disclosure of the participation in the trials.disclosure of the participation in the trials.
Doctors do not inform the participants about Doctors do not inform the participants about the processof the testingthe processof the testing
do not provide the participants with the results do not provide the participants with the results either. either.
They do not share the information on any side- They do not share the information on any side- effects or the consequences of the treatment.effects or the consequences of the treatment.
ExamplesExamples
ARMENICUM - aARMENICUM - a medication medication developed in Armenia. The developed in Armenia. The trials were carried out in trials were carried out in 2004 in St. Petersburg. 2004 in St. Petersburg.
ARMENIKUM – an ARMENIKUM – an immunomodulator on the immunomodulator on the basis of iodine.basis of iodine.
Patient rights violationPatient rights violation
Getting access to ARV-treatment only in case Getting access to ARV-treatment only in case of agreement to participate in trials. of agreement to participate in trials.
Patients forced to sign a contract stipulating Patients forced to sign a contract stipulating non-disclosure of his participation in the trial non-disclosure of his participation in the trial and exempting the company of any and exempting the company of any responsibility for results. 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 No information about possible side-effects of
the medication under trials.the medication under trials.
The medication "VITURID"The medication "VITURID" developed on the basis of mercury developed on the basis of mercury
( quicksilver) 5 years ago and not ( quicksilver) 5 years ago and not officialy registred .This medication officialy registred .This medication did not go through trials at all, did not go through trials at all, and besides it is simply dangerous and besides it is simply dangerous for health. It is still illegaly sold at for health. It is still illegaly sold at 500 euro per month claiming 500 euro per month claiming 100 per cent success. 100 per cent success.
Clinical trials in Russia Clinical trials in Russia are:are:
Not transparent. The patients do not Not transparent. The patients do not get the results of the trials; get the results of the trials;
The violation of the norms and rules The violation of the norms and rules of trials; of trials;
The patient's rights violations; The patient's rights violations; The absence of guarantees to be The absence of guarantees to be
treated with ARV after the trials.treated with ARV after the trials.
There is no point in waiting There is no point in waiting for someone else to lobby for someone else to lobby for the interests of for the interests of people living with people living with HIV/AIDS, including drug HIV/AIDS, including drug users. If we do not make a users. If we do not make a joint effort, nothing will joint effort, nothing will change.change.
Contact informationContact informationPO “Community of PLWHA”PO “Community of PLWHA”
Chairman - Mr. Samoilov DmitryChairman - Mr. Samoilov Dmitry
Web: Web: www.positivenet.ruwww.positivenet.ru
E-mail: E-mail: [email protected][email protected]
[email protected]@positivenet.ru
Tel: +7 095 9747723Tel: +7 095 9747723
Address: 125190 Russia Moscow P.O. Address: 125190 Russia Moscow P.O. BOX 77BOX 77