Public organization

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Public organization Community of people
living with HIV/AIDS
Russia
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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 50 000 people in Russia
  need to get ARV treatment but currently fewer
  than 1 000 people aretaking the treatments.

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Discrimination against PLWHA in Russia

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

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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.
• Advocating for access to treatment for PLWHA
• Public awareness campaigns.
• HIV-positive community building
• Fighting against diccrimination and for human
  rights.

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Advocacy

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

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Actions

• May 16th, 2004 - All- Russian action on the
  International Memorial Candelight Day in
  Comemoration of People who died of AIDS. ( in
  over 40 Russian Cities)

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• 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)

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• On November 9th - Non-sanctioned action at
  Saint-Petersburg City Hall Smolny where the
  russian revolution started in 1917. 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,)

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• Which city is next ?

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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.
• Doctors do not inform the participants about the
  processof the testing
• 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.

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Examples

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

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Patient rights violation

• 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.
• Denying promised ARV-treatment after trials
• No guaranties for the patients
• No information about possible side-effects of the
  medication under trials.

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• 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.

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Clinical trials in Russia are

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

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• 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.

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Contact information

• PO Community of PLWHA
• Chairman - Mr. Samoilov Dmitry
• Web www.positivenet.ru
• E-mail plwha_russia_at_mail.ru
• office_at_positivenet.ru
• Tel [phone]
• Address 125190 Russia Moscow P.O. BOX 77