“It’s not terrifying to die, it is terrifying not to live”

Svetlana Izambaeva, Miss positive 2005

She is HIV positive, her husband is too. Their baby girl was born HIV negative nine months ago. How does it feel to face society when you know you may be contagious?  And how tolerant is society to such people? Who do they turn to for help to fight the plague of the modern era?  Svetlana Izambaeva, Miss positive 2005, is in our studio today to answer these questions. 

Al Gurnov: Hello, Sveta and thank you for coming to our programme. First of all, could you say a couple of words about the “Miss Positive 2005” contest that you won? What is that contest about and what are the goals? For example, I heard about it for the first time only when you came to our programme.

Svetlana Izambaeva: The goal of the contest is, first and foremost, to give an opportunity to girls from small towns, from the province to come and share their life-stories and even simply to become more active. Because when people find out that they have HIV, they tend to get isolated, to shut down emotionally and it becomes very difficult to even to show your face to someone, to come out. Initially, this contest was for people who are HIV-positive, and it was hard to open up even to the HIV-positive community. It’s even difficult to come to the support group for people who have HIV. So, that’s why the contest was set up. It is organized by the “Steps” magazine and one person who is HIV-positive and who was very actively dealing with this problem. For some reason, he decided that our girls are not active enough.

A.G.: So, if I understand it correctly, this is some sort of a beauty pageant but specifically for girls who are HIV-positive. Am I right or not really?

S.I.:Well, it’s not really a beauty pageant as such. Why was it called “Miss Positive”? To help girls speak openly about this. To help them smile, find joy in life and just be calm about their diagnosis.

A.G.:So, it’s not appearances that are evaluated but rather their attitude to life?

S.I.: Yes, their attitude to life.

A.G.:Ok. So, you said the contest was organized by someone who is HIV-positive themselves. According to numerous data sources we have different numbers of people who are HIV-positive in Russia. What do you think – what number is the one closest to being correct?

S.I.: The statistics claim that it’s over 400, I think…

A.G.: 400 of what?

S.I.: 400,000. But if you don’t take the statistics into account, it’s definitely over one million. I’m not good with numbers and statistics – my husband is though. The numbers provided by statistics should be multiplied by ten, really.

A.G.: Why “by ten”?

S.I.: There are rather few people who are able to come out – most isolate themselves when they find out. There’re a lot of people doing tests anonymously. They get examined and receive the report anonymously too.

A.G.: And they are not considered by the statistics, right?

S.I.: Exactly.

A.G.: Ok. Your husband is HIV-positive as well – is that correct?

S.I.: Yes, he is.

A.G.: Was it your conscious decision to marry someone who is suffering from the same disease?

S.I.: No, the primary reason was love. When we met, I realized that I love this man. And the fact that he was HIV-positive was only of an advantage since we work together. We deal with this problem together. We work on different programs together – we just want to help people. And we want to do it together.

A.G.: You’ve just said – “deal with this problem”. You are not a doctor. What aspect of the problem do you deal with?

S.I.: And what do you think – is HIV a purely medical problem?

A.G.: Well, I don’t think so. That’s why I’m asking you. You said you are dealing with the problem. With what part of it exactly?

S.I.: Well, first of all, it is a psychological and a social problem. As of now, I hold meetings for women - support groups for women who are living with the HIV. Right now we are planning on developing  several projects to offer to state and foreign organizations. We are working on registering our fund and I, Svetlana Izambayeva, am the chairman. I have my own program on helping people who are diagnosed HIV-positive. What we see now, and it’s no secret – is the epidemic of HIV. And there will be more families who are HIV-positive. I want to help coming from the woman’s standpoint. If we invest into women, if women invest into other women, we’ll see better, healthier and happier families. A woman, a child, a husband – this is family. And I have certain programs developed that I would like to implement and work with.

A.G.: In other words, what you deal with is the relationship between a person and society. You work on the person’s side; you believe that the problem is not limited to what society thinks of a person; the way a person views themselves is also part of the problem. So, what are the main difficulties you encounter here? Is it that people are isolated, unwilling to communicate? Or something else?

S.I.: I conduct training on Stigma and Discrimination, and on empowerment. What is empowerment? This is being strengthened inwardly. At one point, I attended such a training myself here, in Moscow. It was conducted by an HIV-positive person, and it set me on fire. It started this fire inside of me. Now I realize that we have to set other people on fire; we should let them know that we have this inward stigma. We separate and isolate ourselves from the society. We have to become open; we have to come out and speak about this issue. We should reach the stage where we are able to tell the society, “Yes, I’m HIV-positive! So what? I can live with this.” The society should also be more tolerant towards this. This is also a problem; we have to work on this end too. Also, there should be prevention….

A.G.: I have a quote from Russia’s chief health inspector Gennady Onishchenko. He said that you, Svetlana, literally gave yourself to combat people’s primal fear. We, doctors, says Onishchenko, allowed to make these people outcasts. You have been working on this issue for a number of years now; have you noticed any changes in the attitude of authorities, including health care authorities, towards people like you and this problem in general?

S.I.: Naturally, I think, it is changing. I want to believe it.

A.G.: But—do you feel it? Or do you believe it?

S.I.: I believe it, and, generally, I can feel it, too.

A.G.: Is there anything new—I mean, on the part of doctors, or authorities?

S.I.: You mean, new programs?

A.G.: New programs, new laws—anything that improves communication between society and HIV-positive people. Anything that helps them not to become outcasts, like Onishchenko said.

S.I.: I’d like to say a few words about what else can be done.

A.G.: Alright, go ahead.

S.I.: For instance, there is a provision in the law that prohibits HIV-positive women from adopting children. Many women find themselves in a situation where they can’t have children but they could give their love to a child. However, there is a provision in the law saying that if you have an infectious disease, you are barred from adopting children. To me, this is a huge shortcoming. HIV-positive people will always be kept on the infectious people list. This is one problem. Then, there is another issue: that of migrants who came here from countries like Kazakhstan, Uzbekistan and Ukraine. They live in Russia, they have families, children; their husbands may be Russian. But once authorities find out these women are HIV-positive, they deport them. What can they do? These girls come to me in tears and say, “I don’t want to go back to Kazakhstan. The man I love is here; the job I like is here. What can I do?”

A.G.: But she’s still a Kazakh citizen?

S.I.: Yes.

A.G.: And they can’t get Russian citizenship?

S.I.: She has HIV. As soon as the authorities found out she’ had HIV, they deported her.

A.G.: And she can’t obtain Russian citizenship?

S.I.: She can’t.

A.G.: Alright, this is to do with authorities. What about society in Russia? I remember 20 years ago, when this problem first appeared, people would just avoid infected people, as if they were lepers. Are there any improvements now?

S.I.: Naturally, we have to correct the mistakes we made at the time. People used to say AIDS was a 20th century plague. Nowadays, people want to correct this. They speak about this on TV all the time, saying these people are just like us. They are in no way different. Quite often, if you look at the books published back in those days, they use this phrase, “AIDS-infected.” How one can be AIDS-infected? We are infected with HIV, not AIDS. So, there is some improvement now; at least, people differentiate between HIV and AIDS. Actually, authorities are just people, regular people. The key point is we have to make information available to them, smile to them, congratulate them on a holiday…

A.G.: Svetlana, you said something interesting in one of your interviews. Quote: “I have acknowledged my status. I think my admission will help many people who are suffering all by themselves. They should realize that they can live with it. Being HIV-positive is not a shame. This is just a new chapter in your life.” Unquote. Could you please help me sort this out? What do you mean, “acknowledged my status”? What is this “new chapter”?

S.I.: “Acknowledged my status” means I learn to live with this. HIV is a critical experience for anybody, and you have to learn to live with it.

A.G.: In other words, when you found out you had HIV in your body, it was a shock to you?

S.I.: Naturally. Such news would shock anybody. The first thing that came into my mind was that’s it, my life is over. There’s no future. I don’t want to study; I don’t want to work; I don’t want anything. The respect that I have gained over 22 years in my village, in my town, was all of a sudden gone. I thought people would fling apples, or stones, at me.

A.G.: Did it actually take place? Apples thrown at you?

S.I.: No, of course not. But when you learn about your new status, there is a kind of…

A.G.: Phobia?

S.I.: … inward fear. It’s like you’re branded. We brand ourselves. It’s a stigma. And a person lives with this stigma. Unless this person is helped by a psychologist, unless he attends group sessions, reads books—unless he has some information on the issue, he or she will always live in fear. I had a real breakthrough. I started talking to doctors; I came here; I started working on this issue. I was empowered step by step; I grew. Naturally, I became strong enough to speak about this. And a new status.

A.G.: Alright, what do you mean by “a new chapter” in your life? Of course, to you, your life falls into two parts, before HIV and after HIV. What makes this new chapter so different, apart from the fact that now you know there is a dangerous virus in your body?

S.I.: I feel perfectly well at the moment, and I don’t sense that there is some kind of virus inside doing something harmful. On the contrary, I like to think it’s so small. I love life. A new chapter means I love life, I’m loved, I’m happy, I have a wonderful, healthy child who loves his mom. That’s a new chapter to me - I help people. Initially, I was at a stage where I had to get enough information in order to overcome my inward stigma. Now, I’m at a stage where I share my experience, talk to other women, other HIV-positive people. Naturally, I’m mainly involved in prevention; I tell people about HIV; I tell them HIV-positive people are not outcasts; these are normal people, and we have to treat them well.

A.G.: Svetlana, please tell us about your child. When did you decide to have a child? Was it a well-considered decision? What did doctors and people around you say? Many believe HIV-positive people should not have children, especially if both parents have the infection.

S.I.: Naturally, this was a well-considered decision. When I got married, I realized what a joy it was to be a mom. Everybody would second that. Fear? I had fear. I know that even if I take all the preventive measures, the risk is limited to 1-2%. In other words, it is just 1% but it is there.

A.G.: The risk of your child also having the virus?

S.I.: Right. Naturally, when I first got pregnant and I thought about this possibility, I was afraid.

A.G.: Is this the reason why many women, as you said, prefer to adopt children? Is it because they are afraid of this 1%?

S.I.: No, actually, this is not the primary reason. Usually, it’s some inward problems or something. Doctors used to say that when a woman is pregnant, her immune system is depleted, and with HIV-positive women, their immune system is weak already. Later, they found out that, although the immune system of a pregnant woman gets weaker, it recovers afterwards.

A.G.: Where did you deliver your child? At a regular hospital? Or at some special hospital?

S.I.: I went to an infectious diseases department of a regular maternity hospital in Kazan. That’s where all HIV-positive women go. Of course, the law allows me to go to any clinic, but, unfortunately, not every doctor is sufficiently familiar with HIV specifics and has everything necessary. If an HIV-positive woman is operated on or delivers a child, she needs anti-retroviral therapy, and her child should also take anti-retroviral drugs for the first 72 hours. There are some special measures that need to be taken, and only these doctors know how to do this.

A.G.: Did you deliver in a regular way, or did you have a C-section?

S.I.: I had a C-section. The World Health Organization recommends that all HIV-positive women have a C-section.

A.G.: But C-section involves blood; this is an abdominal operation…

S.I.: In other countries, you can have a bloodless Caesarean section. In Russia, like you said, it’s an abdominal operation. But the problem is, if a baby travels through the birth canal, he can swallow some of the amniotic fluid. That’s why HIV-positive women should have a C-section. If the level of the virus in a woman’s blood is reduced below a certain level, she can deliver in a regular way.

A.G.: The process of childbirth is so sophisticated, almost like spaceships docking together in space.

S.I.: God created us in such a marvelous way that the uterus protects the child against all diseases.

A.G.: So, eventually, thanks to your efforts and those of the doctors, you delivered a healthy baby. How old is he now? Two years?

S.I.: This week he’ll be nine months old!

A.G.: Congratulations! Nine months… So, tests indicate the child is healthy?

S.I.: Yes. We had three tests, three blood samples. The results are HIV-negative.

A.G.: Is it a boy or a girl?

S.I.: It’s a girl. Her name is Eva-Maria.

A.G.: Eva-Maria? Why did you give her such an unusual name?

S.I.: We thought Eva would be too short. Her godmother’s name is Marion Fisher, so we decided to add “Maria.”

A.G.: I know that you worked as a barber.

S.I.: That’s true. I continue to work at home. I have many customers.

A.G.: I think I read in one of your interviews that generally HIV-positive people are prohibited from working in such areas.

S.I.: No. Actually, there are many people who hide the fact they are HIV-positive and still work as barbers. In 2005, when I said openly I was HIV-positive, doctors in my hometown told me, “Now you won’t be able to work as a barber!” And I asked them, “Why?”

A.G.: That’s what I’m saying.

S.I.: “But you work with sharp tools!” “So what? What do you think, I’m going to cut my finger, and then cut the other person, and mix our blood together?”

A.G.: It must have been extremely difficult for you to overcome all these things! You are such a young girl, and it takes a lot to persuade so many people and so many organizations…

S.I.: At first, it was difficult. There was some inward fear. People would come to me and say, “Sveta, you gave me a haircut yesterday. Are you sure it can’t be transmitted through hair?” I would take a deep breath, try to smile and provide an intelligent answer. But you can’t imagine how I felt during the night.

A.G.: Did you have a feeling like you were all alone, and the whole world was against you?

S.I.: No. Even when I stood alone on the stage, receiving the Miss Positive Award, people in the audience applauded me, and I felt this power. I’m in the community of people who live with HIV; I communicate with them, I know them, I love them, I even adore them! Actually, it’s not just those who are HIV-positive. When I stood on the stage, I thought, If I speak to people, if I can present information to a person in an intelligent way, he will come home and share this with his family, his mother, his children. He’ll tell them about HIV, that there’s this girl who was infected through a sexual contact. He’ll tell his son he should have safe sex. He’ll give him condoms. So, because of me, the percentage of infected people may decrease.

A.G.: That man who infected you—you said earlier you were on vacation and you had an affair—did he know he was HIV-positive?

S.I.: No.

A.G.: Well, did he find out later? Or he still doesn’t know?

S.I.: No, he knows.

A.G.: He knows?

S.I.: I prefer not to talk about this.

A.G.:  Another question—probably the most important one. Our society today, the society you live in—does it help you? Or do you have to fight with its prejudice? Would you say our society has started to help people like you?

S.I.: I don’t see myself as a fighter. To me, the biggest problem regarding HIV is that there’s not enough love on the part of people. People don’t love themselves. They don’t even respect themselves. At some point, it seems, they forgot about themselves, an then God sent this plague, HIV. We have to be more caring with one another, love one another, and respect one another. Start with yourself. How can you love somebody else, if you don’t even love yourself? The first topic we cover in our training group for women is “Learn to Love Yourself.”

If you have any questions to Svetlana, please contact her on +7 927 4044584