Patients monitoring project « Simona 20-11, 20-12»

1. Patients monitoring project «Simona 20-11, 20-12» A.VolginaP. Girchenko D. Godlevskij

2. Simona • The project based on the idea of mobilization of communities of people living with HIV / AIDS through their involvement in the monitoring of access to health care and medical services. • In monitoring process involved not only the self-organization, but also activists who want to contribute to the receiving and development of reliable information. • The project started in 2007, thus SIMONA + is probably the longest in the world of project on monitoring the availability of treatment and the stock outs

3. 2010 • SIMONA+ Project, implemented in 2010, was the only one in Russia source to provide reliable and timely information about the stock outs. • Monitoring carried out by patients in more than 20 regions of Russia in the framework of SIMONA + demonstrated that stock outs in Russia's regions do exist. • Monitoring solved the problem of generalization of the available information, and, moreover, demonstrated that such a generalization is necessary and possible.

4. Project 2010 Strengths • Mobilization of community • Developed specific demands • Attracted the attention of public • Worked out the mechanisms of reaction (the action, the courts, mailing) • Thus, the project SIMONA + played a vital role in addressing the shortages of ART in 2010 and proved the necessity of continuing this work in the future.

5. The project 2010 Weak sides • Too many topics to be monitored. Monitoring of all others in addition to stock outs, was not worked out advocacy • Very long and complicated forms made ​​it difficult to fill in data and questioned the reliability of the information. • Lack of information exchange between center and regions

6. Between projects time • May-July 2011 - 38 requests from community organizations and individual patients from the entire territory of the Russian Federation (St. Petersburg, Moscow, Chelyabinsk, Kemerovo, Volgograd, Ulyanovsk, Samara, Chrysostom, Kursk, Tula) stock outs of testing for VL and IS • 7 complaints from prisoners • Not systemic, but provide a basis for concluding that situation with access to adequate testing for viral load and the IS is threatening. The number and nature of the data obtained suggest that the problem is systemic and not the result of individual deficiencies.

7. 2011-2012 • Organizations: • «SVECHA», • «Е.V.А.», • Patients in control

8. Project structure 2011-2012 Coordinator AdvocacyRegionalSociologist Accountant specialist coordinator Regional correspondents Patients HIVPatients HIV Patients HIV

9. Regions • Advocacy capacity • Organizations and Activists • Changing regions • Quality of work • Timeliness •   Leaving the project • Let's gather more .... • And let's work on a volunteer ....

10. 2011-2012 8 months (September 2011 года – April 2012 года) Collected 1408 questionnaires from 23 cities of Russia

11. 2011-2012 612 questionnaires designed to study the access to treatment 49.5% of men 50.5% of women mean age, 32.34 years 796 questionnaires designed to study access to testing 47.9% of men 52.1% of women mean age, 31.68 years

12. Results 2011-2012 All of the city - the project participants were classified according to the prevalence of HIV infection. The results showed that the higher prevalence of HIV in the city, the greater the number of specialists the patient must pass before being getting ART

13. Results 2011-2012 Among specialist there almost no TB doctors, but often met psychiatrists, dentists and PROCTOLOGISTS

14. Results 2011-2012 • Obviously, each additional consultation raises the barriers for access to ART • It turns out that the higher the level of HIV prevalence in the city, the higher the threshold to receive ART

15. Results 2011-2012 • As compared to 2010 in 2011 there have appeared a new problem of access to testing for immune status (IS) and viral load (VL) • Simon put the project + aim: in addition to work on monitoring the availability of ARVs medication record this problem

16. Тестирование перед началом лечения • Перед назначением АРТ сдали анализ на: • Вирусную нагрузку: 96,7% • Иммунный статус: 99,2% • При этом только: • 74,8% сдали биохимический анализ • 61,1% сдали клинический анализ крови • Только 53,2% прошли тот или иной вид тестирования на туберкулез

17. VL access

18. Immune status access

19. Stock outs with ARV 22.6% of respondents reported that they changed their regimen during the last 6 months 5.6% of those surveyed said, that doctor replayed that medications they needed were out of stock.

20. Over the past six months have changed the regiment

21. Doctor replied about stock outs

22. Why change regiment?

23. All that and even more in our last report ;)

24. Strengths and weak sides • Managed to improve the quality of the data • Managed to improve the involvement of regions in advocacy activities • Information exchange still poor • Data is small (themes and issues that arise, but are not covered)

25. Plans • Return to the scientific idea: • Publications • Testing theories • Larger data set, details and related problems • The involvement of research groups - the dream

26. THANKS: The whole team and especially the regional correspondents MD Damir Bikmuhametov Open Society Foundation (OSF)

27. Thank youfor your attention ! alexandravolgina@gmail.com +79219756206