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PATIENTS IN CONTROL

PATIENTS IN CONTROL. July 2012 , Washington. PATIENTS IN CONTROL.

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PATIENTS IN CONTROL

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  1. PATIENTS IN CONTROL July 2012,Washington

  2. PATIENTS IN CONTROL • Patients in Control is a movement of people living with HIV and other socially significant diseases, as well as their supporters. Our goal is to ensure effective control over medical services provision in the Russian Federation.Our demands include: • Ensuring uninterrupted access to treatment and testing for all who need it • Reduction of prices for ARVT (Hep C, TB … treatment) leading to increased access • Development and implementation of mandatory HIV (Hep C, TB …) treatment protocols in the Russian Federation; • - Registration and availability of new drugs for HIV (Hep C, TB …) treatment;

  3. PATIENTS IN CONTROL • Our Methods: • street actions (PiC is the only community movement in Russia openly speaking about problems in HIV treatment) • dialogue with key stakeholders (meetings, sign-ons, petitions) • mass media work, including social (press-conferences, protest actions, viral videos)

  4. Social media plus and minus • Plus - Good to use democracy-limited settings • Minus – Must be good internet coverage

  5. History • The informal movement Patients in Control was founded in 2010 by people with HIV, viral hepatitis and other illnesses, along with people who wanted to defend their rights. • Since then, we have: • Organized more than 20 street actions aimed at improving access to treatment; • Held numerous negotiations with decision-makers in different regions of Russia on issues of treatment provision • Organized several press-conferences on the federal and regional level; as a result, hundreds of articles were published, several radio and TV programmes were made; • Initiated a number of sign-on petitions to stakeholders in the field of access to treatment • made several viral videos on issues of treatment provision

  6. Successes • Recognition of stock-outs by the government • Reduced stock-outs • The success model was transferred to TB treatment • Public awareness about treatment increased

  7. PATIENTS IN CONTROL

  8. First campaign 2010-2011 • More working with “regular” media • Still were trying to get TV • Message “People are dying” • No groups in Facebook and Vkontakte (russian facebook) Obstacles: censorship ( no actions on TV), stigmatizing manner of presenting by that kind of media, unpopular message,

  9. Funeral bureau campaign • Google bomb • Viral video • Facebook and Vkontakte, Ljournal, twitter • Blogs on famous media platforms (Radio Freedom) • Connecting with famous bloggers (Navalny) – 2000 view in one day

  10. FUNERAL BUREAU CAMPAIGN • Looking for a funeral bureau? – Visit the website of the Ministry of Health. Why? • - USD1700 000 for a furniture set in the Minister’s office (annual budget of a small provincial hospital) • - 100 000 for developing a new standard for the first aid kit (merely adding two new drugs to the list) • - 6 years in a row HIV-positive people have problems with accessing life saving treatment and testing, and the Ministry does not even want to develop treatment guidelines • - 10,000 HIV-positive people die every year • Replace the logo! Spade and works instead of boring flowers! • - You think it is funny? 60,000 people are infected with HIV every year. In several years, they will need treatment, which is lacking already today. • http://www.youtube.com/watch?v=ZdfwHVzxw_8 • Looking for a funeral bureau? – Visit the website of the Ministry of Health. Why? • - USD1700 000 for a furniture set in the Minister’s office (annual budget of a small provincial hospital) • - 100 000 for developing a new standard for the first aid kit (merely adding two new drugs to the list) • - 6 years in a row HIV-positive people have problems with accessing life saving treatment and testing, and the Ministry does not even want to develop treatment guidelines • - 10,000 HIV-positive people die every year • Replace the logo! Spade and works instead of boring flowers! • - You think it is funny? 60,000 people are infected with HIV every year. In 10 years, they will need treatment, which is lacking already today. • http://www.youtube.com/watch?v=ZdfwHVzxw_8

  11. New ideas • Mobile phone advocacy ( voice recorder, videos) – using in advocacy • Educational videos about advocacy methods (informal – up to 30 min) • Training for activist – then patients – self reporting though social networks (FB, VK, twitter)

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