Natasha Sidorenko’s current interviewee is a peer consultant on HIV and tuberculosis from Uzbekistan Oksana Rusnak. She has twice been successfully treated for different types of tuberculosis. Currently she is mobilizing a community of people who are affected with tuberculosis in Uzbekistan.
– Tell me, please, do you have HIV?
Yes, I have been living with HIV-positive status for more than 15 years already. I live with it openly. I give interviews, both about HIV and about the fact I had survived TB.
– When did you learn that you have HIV infection, how did you react, how has your life changed since that moment?
I cried for half a day, and then the future husband told me: Oh, what nonsense, what are you crying? God will heal you. I asked: do I have a choice? He said yes. Then I decided that I will be alive. For 15 years I didn’t even take ART. You could even say that I was a dissident.
– So you just plain refused to take therapy?
I explicitly refused to take drugs, I rejected the fact that HIV exists at all. But then I got sick with tuberculosis for the second time. 2 times I was sick with tuberculosis, the first time I had bilateral disseminated pulmonary tuberculosis, intestinal tuberculosis. That happened in 2013. I had a surgery after that.
– How did you know you had tuberculosis?
My throat started to hurt, I lost my appetite. I had fever. Then I went to an otolaringologist, for a long time they could not diagnose that I had tuberculosis. They did not guess to do X-ray screening, they did not observe the usual symptoms of tuberculosis. I had no sweating, no common symptoms of tuberculosis.
– How many CD4 cells did you have then?
I do not know as for that moment. Before I became seriously ill, I took tests for CD4 in a private clinic. I had 380-390 CD4 cells then. I thought it was not very bad. Therefore, I did not go to the AIDS center. Because my first visit caused just awful impressions. I said that I will never ever set my foot there. I was just getting married and I needed medical assistance. We have a mandatory procedure. You will not be given a permission in the family status registration office until you pass a full medical examination. Not only should you get tested for HIV, but to pass complete health screening. Mental hospital, TB clinic, drug addiction check, gynecologist, ophthalmologist, cardiologist – you have to visit all these doctors.
– This is awful.
Look, Natasha, we have a specific mentality in our country. People have a habit to conceal the diseases, for example, mental illnesses and other serious diseases. Young men and women get married, and then it turns out that one of the partners has schizophrenia.
– There were cases when marriages were canceled?
When this procedure of mandatory medical examinations was introduced, at first there was a rush. Now most often people already know if someone has an illness. Although some still try to deceive. Parents say, let’s just go to the priest, my son has already been deceived once. The priest will read the prayer and announce the couple a husband and wife. And then the girl becomes pregnant, gets tested in the hospital and it becomes obvious that she is HIV-positive. Therefore, I believe that this is a mandatory procedure, it is necessary. A person must have a choice. My husband is aware that I have a HIV-positive status, he made this decision knowingly.
– Do you have children?
No, we do not have children of our own with him. I have two adult daughters already. They know about my status since childhood. When I was pregnant, I didn’t even use drugs and I did not have HIV. At 16, I gave birth to my first daughter. My second daughter is adopted; she already has her own kids. I am a young grandmother. We have a big family.
– And let’s get back to your TB story. The doctors could not diagnose you for a long time. And what was next?
I developed leukopenia, my hemoglobin index fell drastically. Doctors insisted on hospitalization and full examination. I went to a regular state hospital. I have made X-ray there. They immediately referred me to a tuberculosis hospital. There I was diagnosed with tuberculosis. It is good that I had a high CD4 cells count then.
– Did you immediately tell your family and friends that you have tuberculosis? How did they react?
Yes, of course, right away. My friends all knew that I had HIV. And the fact that I had tuberculosis did not scare anyone. I am a person who is not accustomed to hiding anything from anyone. If people want to communicate with me, they are welcome. If not, then I will not take offence. Friends need to know everything about me. Everyone came to my hospital to visit me. I even had a situation that I could not sleep during the sleep hours, I did not have time.
– What type of tuberculosis did you have? How did the treatment go?
I had susceptible lung tuberculosis, smear-negative form. I took first-line therapy. I was put in a hospital for 60 days. Although I had a smear-negative form, but this is a standard procedure, one has to stay 2 months under the supervision of doctors. The conditions in the hospital were okay. I will not say that the hospital was very comfortable, it is an old facility. Now it has been closed, reconstruction is done. The hospital is located right in Tashkent. I had a very good doctor. She even provided psychological help, she came to see me every day. Moreover, I kept optimistic myself.
– Did they offer you to take antiretroviral therapy then?
I did not go to the AIDS center. There was no infectious disease specialist in the tuberculosis hospital. The doctor asked me: “Do you take ARV therapy?” I said that I do not take it and do not want to.
– Did you have enough information about tuberculosis?
Yes I knew virtually everything about tuberculosis. My husband has been ill with tuberculosis for more than 10 years. We met in a rehab center, now we go to church together. We have been married for 15 years. He has no HIV infection, he has recovered from tuberculosis.
– Tell us how the treatment for tuberculosis progressed? There were any side effects?
Yes. My joints ached severely. But the side effects did not last that long. I told the doctor about all the side effects. I have been in hospital for 2 months and I was discharged to an outpatient stage. But on the day of the discharge I had an intestinal perforation. I had a surgery immediately. I had a stomach pain in the hospital, but doctors thought it was a gastritis. After the surgery, it became clear that this is an intestinal tuberculosis. I could not take any drugs orally. Therefore, to complete the course of treatment, they prescribed me intravenous infusion of medications. I was excluded from the supervision list in the tuberculosis dispensary, I had no active tuberculosis. For a while, I felt pretty okay, but at one moment I began to lose weight. I had no appetite and developed a diarrhea. The fistula opened again. And I went to the hospital for surgery. The doctor knew that I had HIV. He asked if I take therapy. I said that I do not want to go to the AIDS center. He referred me to his friend. I was examined and it turned out that I had 30 CD4 cells only. I was scared that I could die. The phaseless destruction of lungs developed. I had already been ill with an open form of tuberculosis. I passed the tests and the doctors enrolled me in a tuberculosis hospital. I knew perfectly well how fragile my condition was with such a low CD4 count. I knew enough about the therapy and about HIV. I understood I was going through a very dangerous period.
– Did you visit any self-help groups then?
No, I began visiting them after that hospitalization. And not to get psychological support, but to cheer up other people instead. Look, I had returned from the brink of death. For about a month I received tuberculosis treatment and after that I was prescribed ARV therapy. I was afraid about a low level of CD4 cells. But when I started to treat tuberculosis, the severe symptoms resolved, I resumed appetite, I began to feel normal. And the fear has passed.
– You literally learned from your experience that ARV therapy works, right?
Yes. I immediately stopped being an AIDS-dissident and became a peer consultant.
– And how do you think, can early TB diagnostics save lives of HIV-positive people?
Absolutely. Every six months you must be tested for tuberculosis. And once the very first symptoms appear, of course, you need to go to the doctor.
– Does AIDS Center provide drugs to prevent tuberculosis?
It is obligatory. Absolutely all patients receive isoniazid. Some take it, if they care about their health. But there are those who do not take prevention therapy. I think it’s 50/50.
– How was the treatment going on for the second time?
I took medications for 9 months. My phthisiatrician has studied how all drugs in my treatment scheme interact with each other. I spent about three months in the hospital. All the rest of the treatment was outpatient. I had to go to the clinic at my place of residence and receive my medication. Already a year since that I was excluded from the supervision list. It happened more than a year ago. I remember how I was told that I was healthy. I was very happy. I’m an optimistic person. I will not say that the treatment was extremely difficult to overcome, I did not feel that terrible.
– How often do you currently get tested for tuberculosis?
Every six months, the last time was a week ago.
– What are the myths associated with tuberculosis, did you encounter them?
Not everyone believes that TB is curable. People see a large number of people lying in the hospital, many people interact with each other. Chronic patients say that they are treated for as long as even 10 years. People ask, and we will have to get treated that long too? I say: no, these are people who do not follow the treatment. They stop taking treatment when they start feeling better. They do not complete the treatment. And so they come to the hospital again and again, they themselves contribute to development of resistant forms of tuberculosis.
– What can increase adherence among people who discontinue therapy?
I think that DOTS is needed. Drug-dependent patients in the anti-tuberculosis service facilities do not receive narcological assistance. They continue to use drugs. Probably they need specific assistance.
– How tolerant is the society to people who live with HIV infection? To people who treat tuberculosis?
It is absolutely intolerant. Discrimination and stigma are terrible. I have now started working as a tuberculosis counselor in the NGO Intilish Information and Education Center. It is located in the premises of the city TB dispensary. I come to patients who are already on an outpatient treatment. Our goal is to motivate them for the high adherence to treatment so that people complete a treatment course properly.
– Can you present some examples of discrimination in society?
When the people have to go through medical screening before the marriage, and it turns out that the young man has tuberculosis, the fiancee’s parents would not let their daughter be married to him. In the hospital, there were adult women with me, they did not tell anyone about their disease. Because people will not communicate with them. People think that tuberculosis is a shame.
– What is the reason, what do you think? Why is society so intolerant? The disease is curable, after all.
I think that from the lack of information. We live like in the Middle Ages here. No one knows about tuberculosis.
– What could change such attitude?
Reliable information, not just terrifying posters in polyclinics. Information should be provided in a clear language. And it is necessary to do it everywhere: reports in the media, theatrical performances on the streets. Even those posters in a polyclinic should be colorful, attracting attention, and not scary. And we need people who have gone through the path to curing the disease speak up with open faces. Do not be afraid to say that you have been ill with tuberculosis.
– What are you doing, besides being an HIV/TB consultant?
Until recently, I led a women’s group. At first it was intended for drug-dependent girls. Then it turned into two different groups, for drug dependent and for HIV-positive women.
– Except work and activism, what else do you do in your life? And what are your dreams?
My husband and I have the shelter for stray dogs called Gavcheg (“The Arc for dogs”). I think we already have a big shelter. We are not always able to financially and physically support it. It is emotionally difficult, animals sometimes get sick and die. Now we have 75 dogs. In our apartment there are 3 dogs, 3 cats. At the former workplace of my husband, at the factory, 30 dogs are accommodated. We also bought a summer cottage outside the city. We built enclosures, there is a 2-storey small house, where a caretaker lives. This man was a former drug user, he was homeless. He loves animals very much and he has a chance to recover. Our dream is to open an animal shelter and rehab for people. So that everyone can come there, recover, learn to take responsibility while caring for animals. So far it’s just a dream.
– Thank you so much.
Natalia Sidorenko, the expert of the regional #PARTNERSHIP program representing the TBpeople network, held an interview. The mission of the network is “to unite people, to defeat tuberculosis”.