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

A.VolginaP. GirchenkoD. Godlevskij

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

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.

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.

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

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.

• Organizations:– «SVECHA», – «Е.V.А.», – Patients in control

2011-2012

Coordinator

Advocacy Regional Sociologist Accountant

specialist coordinator

Regional correspondents

Patients HIV Patients HIV Patients HIV

Project structure 2011-2012

– 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 ....

Regions

2011-2012

• 8 months (September 2011 года – April 2012 года)

• Collected 1408 questionnaires from 23 cities of Russia

• 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

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

Results 2011-2012

• Among specialist there almost no TB doctors, but often met psychiatrists, dentists and PROCTOLOGISTS

Results 2011-2012Level of HIV prevalence The median value of experts,

whose advice was needed before prescribing ART

Lower 300 (on 100 thousands) 1

300-500 2

500 -1000 4

1000+ 5

• 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

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

Results 2011-2012

• 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

Тестирование перед началом лечения

VL access

Immune status access

• 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.

Stock outs with ARV

Over the past six months have changed the regiment

57,50%

35,90%

33,30%32,40%30,00%

28,60%

25,00%24,00%23,50%22,50%

17,50%15,00%

12,50%10,00%

8,00%7,70%

3,20%0,00%0,00%

0,00%

10,00%

20,00%

30,00%

40,00%

50,00%

60,00%

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Процент от общего количества опрошеных в городе

35,70%

20,00%

10,00%7,50%5,90%5,90%5,00% 5,00%

2,90%2,60%2,50%

0,00%

5,00%

10,00%

15,00%

20,00%

25,00%

30,00%

35,00%

40,00%

Москва

Калининград

РязаньУфа

Тольятти

Тюмень

Санкт-Пете

рбург

СаратовПермь

Ленобласть

Набережные Челны

Процент от общего количества опрошеных в городе

Doctor replied about stock outs

Why change regiment?

All that and even more in our last report ;)

– 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)

Strengths and weak sides

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

Plans

THANKS:The whole team and especially the

regional correspondentsMD Damir BikmuhametovOpen Society Foundation (OSF)

Thank you for your attention !

alexandravolgina@gmail.com+79219756206