AIDS Foundation East-West (AFEW) recently held a ‘Health School for Mothers and Children’ at the ‘Lesnaya Zhemchuzhina’ holiday resort in Samara. The event was financed by the Eureko Achmea Foundation and brought together women living with HIV from the Samara Region, Ulyanovsk Region and the Republic of Tatarstan. Read more about the event’s aims and format on www.afew.org…
Marina Cherkasova, Project Manager and Communications Officer in Russia, talked to three of the participants to find out why the event was important for them and about life for women living with HIV in Russia.
Anastasia Afanaseva is a Social Worker based in the City of Samara
‘As a social worker, I have worked on projects for sex workers, injecting drug users, conducted outreach work and attended self-help groups for women. At the moment, I’m involved in planning a new project for women living with HIV in Samara.I’m taking part in the school mainly out of personal curiosity. First of all, I really wanted to meet with Sveta Izambaeva, because I want to know more about her personal experiences of being a woman and a mother living with HIV. On the whole, I’m well-informed about HIV, but I wanted to go deeper into issues such as human rights and advocacy.
Discrimination is the main problem facing women with HIV in Russia. A woman living with HIV meets discrimination everywhere she goes: in clinics, at work and within the family. It’s particularly hard to communicate a diagnosis of HIV to medical specialists and close friends and family. Women need psychological support more than anything, so that they are not alone with their problems. In Samara, they can access psychological support through the ‘Time to Live’ project. We help them to make contact with the specialists that they need – psychologists, lawyers and public officials. We also help them to obtain medicines when they need them and milk supplies for their babies.
After the training I had so many ideas for creating new projects and putting new initiatives into action. I was so uplifted by the school and it was good to see how the trainers did such a professional job.There was such a warm and friendly atmosphere here and people were so supportive of one another. Everyone there cared and no-one felt the need to hide anything. All questions were treated as being important and there was always an answer.’
Svetlana Izambaeva is an expert in prevention of mother-to-child transmission of HIV and trainer based in Kazan
‘When I first found out that I had HIV, I was so distressed by the thought that ‘Today, it’s me. Tomorrow, it will be someone else’. I realised that I had to do something to combat this epidemic. When you speak to other women about what they have been through, you start to feel more confident about your own powers of endurance. You start to hope that you will live and are even able to talk about your problems openly. This is what I mean by combating the epidemic and the more of us who do this, the bigger are the chances that we will be heard.
I’ve been running a self-help group since 2005. Ever since I took part in the ‘Miss Positive’ contest, I’ve worked actively to advocate for my rights and the rights of other people living with HIV.
The main problems facing women living with HIV are stigma and discrimination, and that includes self-stigmatisation. Medical professionals tell us that they are not taught to be tolerant towards people living with HIV during their time at medical school. They just don’t realise that many different kinds of people get HIV and not just those who take drugs. That’s one reason for the bad attitudes towards us. Another reason, in my view, is the prevailing view of women in our society. People think that women just take care of their families and shouldn’t talk about their rights. But, when a woman is diagnosed with HIV, she has to start fighting for her own rights and those of her children.
And now there are more and more children being born with HIV in Russia. Issues like childcare and provision of milk to infants need to be solved at the legislative level, because it’s very expensive for parents to resolve these issues on their own.
<There is also a lack of non-medical services for women living with HIV and their children. Drug users can go to rehabilitation centres and dispensaries, but there isn’t anything like that for women, even for those who have been subjected to violence because they have HIV. They have nowhere where they can leave their children when they want to attend a self-help group. HIV discordant couples also need additional help, because they are poorly informed and are afraid to look for help.
Many maternity clinics are simply not equipped to deal with women living with HIV. They are put on isolation wards together with drug users and they are not allowed to choose which maternity clinic they go to. Doctors often do not know how to offer consultations to these women or what services they need. I think they need to start incorporating modules about HIV into maternity training.
I’m well-known among journalists in this region and they are ready to work with me. But they do need much more education, because they make mistakes in the way that they write about HIV. For example, they may write that a person ‘is sick with AIDS’. Such language affects the way people relate to us and there needs to be more education for journalists, just as for trainee doctors, so that they are HIV literate. The mass media is important because it forms public opinion. People listen to the media and make decisions on the basis of this information.
There was such an atmosphere of goodwill at this school. All the participants were motivated and keen to obtain information. They were all ready to help one another. If we continue to pull together like this, we will really be able to change things and people will listen to us! Together, we need to strive towards optimism and the good in life.’
Alyona is a peer counsellor and activist based in Samara
‘I took part in AFEW’s school because I plan to work as a peer counsellor for a joint project run by the All-Russian Public Organisation for People Living with HIV and the Red Cross. Through this work, I hope to reach and help other people living with HIV. On a personal level, this school comes just at the right time for me, because I am planning my second child and so the latest information about prevention of HIV transmission from mother to child is very useful. I also just like taking part in these training and educational sessions.
Almost all women living with HIV encounter discrimination at some point: as a public health worker, I’m most upset by the lack of understanding shown by doctors. The lack of information is a huge problem, because people get scared simply by so much being unknown and they don’t know where to turn for help. We just don’t have a system that provides professional assistance to women who face issues like HIV.
Nowadays, you can go to your local AIDS centre and in our town there is a ‘School for Patients’. But, we also need help in resolving psychological issues, legal advice and we need access to a range of medical professionals who will observe regulations and patient confidentiality.
They don’t say ‘knowledge is power’ for nothing. At this school, I’ve found out more about my rights and we’ve all had the chance to talk about our personal experiences. I’ve met so many women here who supported me. I will also help them as much as I can. I’ve also loved spending time in the beautiful countryside and pine forest! All the other participants are so sociable and I’ve met so many new people.’
