Oleg Eryomin, Executive Director of BelSet AntiSPID (which stands for Belarus Anti-AIDS Chain), an association of non-commercial anti-HIV/AIDS organizations, talks about supporting people with HIV and tuberculosis.
From 2001 to 2006, the chain functioned as a non-registered association of non-governmental organizations, and in 2007 it obtained registration needed to operately legitimately in Belarus. BelSet AntiSPID does not provide services. The organization creates the environment favourable for legal and social assistance, and fosters social relations to help supporting diverse target groups among people affected by HIV. Currently, the association consist of 16 civic organizations.
The role of NGOs in HIV and tuberculosis control and treatment
Unfortunately, few civic organizations in Belarus work with for the general population. This is an issue because the process of NGO registration is complex, and not every organization may acquire the necessary approval, especially if they target closed groups (MSM, for example).
Nevertheless, when an HIV outbreak occurred in Svetlogorsk in 1996, and the government was not providing enough funding to control it. Civil society organizations were instrumental by securing financial assistance from international organizations. The inability of the government to fund HIV activities persisted. Before 2008, the government almost did not fund HIV/AIDS prevention programs, and antiretroviral treatment (ART) was for most part purchased by the Global Foundation. Today, the government admits that NGOs play significant role in HIV and tuberculosis control in Belarus.
NGOs work during COVID-19 pandemic
The COVID-19 pandemic has changed the work of NGOs. Remote services has become the most popular. These include ART delivery, self-testing, and online consultations. During the pandemic, some partner organizations supplied target groups with masks, gloves, sanitizers. Civic organizations worked and provided their services while maintaining the necessary distance. This helped to avoid any significant reduction in the volume of services for target audience, although there was some decrease.
BelSet AntiSPID, with financial support from AFEW International and AIDSFOND, was providing alimentary support for transgender people who had found themselves in difficult situation during the pandemic. Presently, we provide one-time alimentary support to people living with HIV and vulnerable groups in difficult life situations.
HIV screening and treatment in Belarus
In Belarus, almost every polyclinic, as well as the Hygiene and Epidemiology Center, provide an option of anonymous testing. Any person, regardless of their nationality, may provide a blood sample for HIV testing. At the premises of the civic organizations, an express testing for HIV in saliva sample is performed. During the pandemic, self-testing also became an available option for key groups. The process involves delivery of a package by an outreach worker, after which a person may receive online instructions (via Skype or Viber) and perform a test. This option is available to two groups; MSM and transgender people. We plan to widen this practice. HIV express tests are also commercially available in pharmacies for the price of about 1.5-2 USD.
The HIV screening per se is not a problem in Belarus. But if a foreign citizen tests positive, he or she may face certain problems. A HIV-positive migrant in critical condition is hospitalized and treated for free until there is no threat to their life. When in stable condition, the patient is discharged, but they will not be able to receive ART in this country. It cannot be purchased in a pharmacy or through an NGO.
Supporting HIV-positive migrants
BelSet AntiSPID does not work with specific target groups such as migrants. We conduct pilot projects (for example, our project for transgender people is open until July 2021), but we do not work with them continuously. The chain works with target groups among people living with HIV through partners who provide quality services to HIV-positive people.
We have a website for registering rights violations in healthcare institutions, as well as for provision of support to people living with HIV. Among others, migrants sometimes contact us through this website. We try to help everyone: provide a consultation, make necessary requests, and refer those who seek services we do not provide to other organizations. Recently, we are widening the area of support due to active collaboration with International Organization for Migration (IOM).
Each case of support for a Belarus citizen in migration is handled separately, as there are many different situations.
For example, our partner organization Vstrecha (meaning “Encounter”) works with MSM. Many Belarussian men go to Russia in search of greener pastures, as there are higher salaries there. These migrants include MSMs among them. If a HIV-positive man knows his status before going, he can talk to a Vstrecha representative in his town, make an ART contract and notify his personal doctor. In Belarus, the quantity of ART enough for 6 months of treatment may be provided, if available. During migration, this person stays in contact with a social worker in Belarus and receives medication from them. The drugs are sent by trains or buses, as postal shipment requires special permissions. Once a year, a migrant is obliged to return to Belarus for testing the viral load and CD-4 cells number (a blood test permitting to assess the immune response to ART), to be able to continue treatment.
If a Belarus citizen find out their HIV-positive status while in Russia, the situation is different. In such cases, foreigners are being deported from Russia, but the system is not too hard on Belarussians, at least in Moscow and Saint Petersburg. They can request ART in Russia through NGOs in Belarus. During the lockdown, there was a situation when NGOs could not send the drugs to a Belarussian citizen on time, nonetheless, the person living with HIV is able to purchase it (it is possible in Russia).
A migrant from Ukraine contacted us not long ago, he who found out about his HIV-positive status while in Russia. He was ordered to leave Russia but did not want to return to his home country. As a result, he came to Belarus, he found a job, and received a temporary residence permit. We helped him with HIV tests and made a request to the Hygiene and Epidemiology Center. Because his condition was not life-threatening; he did not correspond to any category of treatment provision and could not receive ART in Belarus. Unfortunately, in such cases the only option is to return to one’s home country and receive treatment there.
AIDS Centers: stigma or destigmatizing?
In Central Asian countries, the mere existence of a special clinic for HIV-positive people is commonly seen as a stigmatizing factor. At the same time, people living with HIV in Belarus believe it would be better to receive medical support at a special center than at a polyclinic. There are several reasons for this.
In small towns, when a person attends a general polyclinic, information about their status becomes public immediately. There have been cases of medical secret disclosure. Some people have to move home if their HIV status becomes open.
An advantage of a specialized clinic for HIV-infected people is that it employs experts who know how to work with people living with HIV and do not discriminate, as often happens to general physicians.
Medical migration related to HIV
The main reason why people living with HIV move from Belarus to other countries is to get access to better treatment.
I recently visited Germany and talked to HIV-positive Belarussian citizens who receive treatment there with the help of Berliner Aids-Hilfe, a civic organization. Not only is the treatment based on new generation drugs, but also the whole medical service system for people living with HIV is much more effective in Germany than in Belarus.
If it is established that a person has come to Germany due to HIV-related treatment, and the treatment in a home country would be insufficient, such a person gets a 2-year insurance which may be reviewed and prolonged if needed, a place to live, and some financial support. No permanent residence is provided, only the visa prolongation for the period of treatment which sometimes reaches 5 or 6 years. When life-threating situation ends, the patient must return to Belarus. If a residence is desirable, he or she may apply for a refugee status, and complete all necessary procedures which result in obtaining (or not) a residence permit. During the treatment, some people marry or start their university studies, receiving other residence permits unrelated to their HIV status. A similar program is available for people with hepatitis C.
TB treatment in Belarus for foreign migrants
Belarus does not deport foreign citizen upon the discovery of HIV+ status, but the diagnosis of tuberculosis may become a reason for deportation. For some people living with HIV, tuberculosis is a concomitant disease. When M. tuberculosis shedding has stopped, and a foreign migrant has received emergency care (if needed), he or she has two options: to purchase medications by their own account, or to return to a home country. If such a person can afford treatment, they can stay in Belarus. The period of stay varies by the country of origin: it may be indefinite for Russian citizens, up to 90 days for countries of the Commonwaelth of Independent States, and for others, depending on the time of the visa they have. In any case, a foreigner must register their stay in Belarus, according to the law “On the rights of foreign citizens and stateless persons in the Republic of Belarus”.
In general, civil society programs in TB care are not so well developed in Belarus. We have in Belarus an organization called “Defeat TB Together” (“Победим туберкулёз вместе”), which does not provide direct services to patients with tuberculosis. Their work mainly involves rights advocacy and legal counceling. This organization also gathers information on the accessibility of tuberculosis treatment and related barriers. If social support is needed, a patient is referred to the Belarussian Red Cross. This foundation is not a part of BelSet AntiSPID. We are their partners and try to help people with tuberculosis when such programs are available.
The article was prepared with support of Oxfam in the Russian Federation