The problem of interruptions of ARV supplies becomes increasingly painful across the world. This is particularly relevant, knowing that in 2010 only one-third of those in need have access to treatment and even for this third, treatment is not necessarily unconditionally accessible and without interruptions. Treatment interruptions are reported from all around the world: Africa, South-East Asia, Latin America, Eastern Europe and Central Asia. Even the often perceived as a ‘golden standard’ in terms of access to treatment EU, had unprecedented problems in Romania. The problem did not pass by Russia either.

Interruptions of ARVs supplies in Russia started when the procurement of ART from the national budget started, namely in 2005-2006. This coincided exactly with the start of the Priority national project “Health”. In the meantime the third and fourth rounds of the Global Fund also provided services in the sphere of treatment. In 2008, however, it became evident that they are not doing equally well-the treatment from the national programme started reporting supply interruptions.

The reasons for the interruptions in the supply in Russia are many and diverse and it is not my task to discuss them in this article. It is more important to realise that that interruptions happen every year and their dimensions grow, as much as the number of people who receive treatment covered by the national budget grows. And, let us face the reality, because until 2010, the interruptions were ‘covered’ by the pills that were received through the fouth round of the Global Fund, which ended in 2010.

The community is trying to resolve this problem in using different means today. These include: protests, proposals for improvement of the procurement and supply system, signatories letters, complaints, collecting unused pills and redistributing them, etc. Further to that, there is an ongoing monitoring of the access to ARVs.

This started in 2007-2008 by the All-Russian movement FrontAIDS with the International Treatment Preparedness Coalition in Eastern Europe and Central Asia (ITPCru). The two organisations started the project, called SIMONA+. The idea of it was to mobilise the community of PLWHA, TB, viral hepatitis and IDU to monitor the access to treatment and healthcare.

Not only formal organisations were involved in this project, but also activists who wished to contribute to the data collection. Special questionnaires were developed that were filled by activists (correspondents from different geographical areas). They covered different topics (not only HIV, but also TB, etc), but had a main focus on access to treatment. The completed questionnaires were regularly collected, the data analysed and trends described.

Thus, thanks to this project, the community, for the first time, with its own capacity, succeeded in documenting the limitations in access to treatment, especially for IDUs. The results of the first part of the project were published in the report “A Point of No Return” (2009), which was broadly distributed both within the Russian Federation and abroad. An electronic version can be downloaded as a PDF file:
http://itpcru.org/assets/files/Tochka_nevozvrata.pdf (Russian)

From December 2009 until February 2010, the second part of the project SIMONA+ was realized and the results were published in October 2010. The data reflects the situation of access to treatment in 19 Russian cities. Using structured questionnaires, 203 interviews were conducted with doctors, social workers, nurses and PLWHA.

The interviews were conducted by representatives of HIV service organisations and community-based groups of PLWHA in Biysk (Altay region), Zima (Irkutsk district), Zlatoust (Chelyabinsk district), Irkutsk, Kazan’, Kaliningrad, Krasnoyarsk, Kursk, Moscow, Naberejniye Chelniy, Novorosiysk (Krasnodar region), Orenburg, Orel, Orsk (Orenburg region), Rostov on Don, Saint Petersburg, Tolyati (Samara district), Ufa and Habarovsk.

Many and diverse barriers to access to treatment were identified. The barriers included:

• Limited supply of ARVs (30% of the places where the interviews were conducted).
• Changes of the treatment regimen as a result of internal problems in the supply chain (36% of the places),
• Lack of one or more ARV medicine as a result of interruption (30% of the places).

However, the situation was particularly depressing when it comes to access for IDUs.

The survey showed that IDUs are systematically excluded from ARV treatment. The link between the exclusion and the problem of interruptions was obvious. In order not to change the regimens of patients with better adherence or “higher social status”, doctors either do not start IDUs on treatment (regardless of the fact that they may need it on the basis of clinical indications), or theyexclude them from treatment programmes altogether. I will suggest that this is not an unique trait of our medical system. It is most probable that something similar will happen in any country with an epidemic that is concentrated in this highly stigmatised subpopulation when supply interruptions happen (or simply when there are not enough medicines).

In all places, where the survey was conducted, AIDS Centres use restrictions, based on social and/or behavioural criteria, when providing treatment. Those criteria go against the WHO recommendation that active use of drugs should not be a reason for exclusion from ARV treatment programmes.

In 18 (out of total of 19) places, people reported the existence of a special commission of specialists that decides whether a patient will receive or not an approval to receive ARVs. The criteria included “social incapability” and lead to discrimination of IDUs and members of other subgroups, thus violating the principle of universal right to access to treatment. We need to keep in mind that majority of HIV-positive people in the Russian Federation are still IDUs.

So, in 18 out of 19 places, a commission of doctors, who often have not seen HIV-positive patients, make decisions whether or not someone will be receiving ARVs. Commonly, the patient is forced to go through extensive tests, before the commission decides the fate of the person, as members of it are doctors who do not. By the time the commission meets, there is a period of extensive testing as members of the commission often are gynaecologists, otolaryngologists, etc., with limited or no experience in HIV. In 14 out of 19 places, the commission does not include either a social worker, or psychologist, or a peer educator who would be in position to assess the preparedness of the person to start and adhere to the therapy. In more than half of the places doctors and social workers said that dependence on recreational drugs was used as a reason to refuse ARVs.

“The personal attitude of the doctor to the patient plays a role, in other words many patients simply are not liked by the infectious disease specialist and this is reflected in their relationship, as well as affects the treatment. If the patient is an IDU, then in majority of the cases this means ‘social incapacity’ of the patient to the doctor”.  Interview with a social worker from Naberehniye Chelniy.

“We give only treatment to IDUs if they are in remission. Otherwise we recommend treatment for the drug addiction”. Interview with an infectious disease doctor from Biysk, Altay Region.

“Firstly and foremost, I am interested in which stage of remission the IDU is-stable or not. It is desirable that the remission has lasted more than a year. Those IDUs who have achieved that have better chances. Then I fill in the candidacy card of the patient and send it to Kazan’ for approval [by the commission]”. Interview with the doctor, Naberejniye Chelniy.

As a whole, IDUs were starting treatment more rarely in 2009 than the general HIV population. So, in Kazan’, from 132 treatment-naïve patients who were to start treatment only 17 were IDUs, in Novorosiysk from 35 naïve patients only 5 had experience in using drugs and in Orsk from 217-only 17.

In 2006 the Russian Federation signed a Political Declaration to Fight HIV/AIDS, taking the responsibility to provide ARVs for all in need by 2010. In addition, the Russian government increased the budget of the HIV/AIDS treatment programmes, promising to provide universal access and in 2010 took the responsibility from the GFATM for the financing and supply of all ARVs in the country.  The right to health is guaranteed to every citizen of the Russian Federation by the Constitution, as well as the right to freedom from discrimination on every basis.

Unfortunately, the results from the monitoring of the access to ARVs survey allows me to make the conclusion that the aforementioned responsibilities are not met. Regardless of the statements of the government, access to ARVs in the Russian Federation is systematically undermined by deficits of ARVs, interruptions in the supply chain and discrimination practices that exclude IDUs from HIV treatment programmes.  The situation is worsened further by the fact that the Russian MoH refuses to recognise the existence of interruptions in the supply chain, which led to activists going again to the streets of Moscow in September 2010, like 6 years ago, demanding their treatment to be returned.

The results of the second stage of the project SIMONA+ can be downloaded as PDF documents:
http://itpcru.org/assets/files/Simona_rus.pdf (Russian)
and
http://itpcru.org/assets/files/Simona_engl.pdf (English)