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Andrey, activist, peer consultant: “When I learned that I have HIV and TB, I thought this is the end!”

September 23, 2018

We continue the series of special interviews by Natasha Sidorenko “Real stories of living with HIV and overcoming TB”.

Photos from Andrey’s personal archive

Andrey, tell me how you found out that you are living with HIV and how you have been diagnosed with tuberculosis.

I learned about my HIV status in 2001. I used drugs then. And in 2003 I came to a TB dispensary, because I was referred there. There was a whole council of physicians deciding what to do with me. I was diagnosed with pleurisy, there was fluid inside my chest, doctors were thinking over something for a long time. Prior to this consultation they were unable to diagnose me. And then a doctor went out of the consultation room and said that everything is fine; they will not make me a puncture. They took my sputum sample, I had an X-ray, those are standard tests, but all this showed nothing but pleurisy. They prescribed me treatment, I completed it and had to pass analyses once more. I passed a lab examination, but was still feeling unwell. The doctors told me to submit sputum test for inoculation. I did not know what it was. I passed the test, and in a month or a month and a half I received a phone call asking to come to the dispensary. I was diagnosed with tuberculosis. I thought it was the end, as I had HIV and tuberculosis. I went through bronchoscopy and found out that I have bronchial tuberculosis. I did not understand what it was. I understand what is lung or bone TB, but I did not know anything then about the bronchial form of the disease.

Then did all this information frighten you?

That was really scary.

And nobody explained anything to you?

At first it all struck me. But I owe very much to the AIDS center doctors, everything is very well arranged there. They cared a lot about me, they explained that things go bad when tuberculosis and HIV are detected on the late stage, but I have been diagnosed in due time and I have good chances. I was reassured by the fact that my form of tuberculosis is not dangerous for others. They asked: are you going to get treatment? I replied that of course, I am. They offered a choice between inpatient and outpatient treatment. I said that I prefer outpatient treatment, because I could not stay in hospital. In the first 3 months I came there every day, took a lot of pills and followed each and every recommendation.

Did you continue to use drugs and was still taking therapy every day?

Every day. And they almost immediately prescribed antiretroviral therapy for me. I would get up in the morning, go to the TB dispensary, take pills, go home and sleep – I could not walk, I was unable to do anything at all. And I did not even inject then. And then with each next month it became easier for me. I did not skip a single time, although I used drugs then. I even came on January 1, when the doctors were sitting there after New Year’s Eve. I came in the morning by 9 o’clock, as usual, and they were surprised why I even had come.  I said I cannot skip taking pills. They said, well, take your pills and go.

Photos from Andrey’s personal archive

Why did you adhere to treatment so strongly?

I wanted to be cured so badly that I would do anything. I did not have any distrust towards the doctors. Six months later, I took bronchoscopy test again. And they told me that everything is fine, that I’m healthy. I had to visit the AIDS center once a month to receive therapy.

And what is the attitude of doctors to people who use drugs in your city?

I have a lot of friends who used drugs and were in hospital with tuberculosis. They had experienced overdose there. Some were transferred to the psychiatric hospital, there is no access for outsiders. Doctors do save our lives and health.

How do you think, can the situation be improved in those regions where drug users are discharged from the hospital due to drug use?

In my personal opinion, substitution therapy in such situations is necessary. People are not admitted to the TB clinic for treatment because they use drugs and cannot quit. Or, alternatively, physicians must come and treat those who have been discharged for violating the regime at their homes. People should be treated, even if they use drugs. I know from my own experience how difficult it is sometimes to get help. They just are juggling you between different institutions. This is a problem. Despite the active drug use, I managed to brace myself and come to get treatment. Not everyone can do this.

When you found out that you had TB, did you have a family? Did you tell your relatives and friends?

I told my parents about this at once. Everything turned out fine, disinfection specialists brought bleach and washed everything in our house. I had a separate dish, although not for long. I had a girlfriend then, she first learned about HIV, and then about the fact that I have tuberculosis. She did not drop me, she went to the AIDS center, talked with doctors, they explained her everything. We separated after some time. But she knew everything and protected herself from infection.

And now how often do you take screening for TB?

As recommended, every six months. I take Mantoux test once a year. Once every six months, I pass fluorography and sputum test.

Where does this happen?

In the tuberculosis dispensary. They give me a referral in the AIDS center, I go to the office of the TB dispensary, where the nurse takes my medical record and gives a referral for sputum analysis. I go to the coughing room to deliver a sputum sample, she waits for me near the door and carries the documents in the X-ray room. It is well organized here.

Photo from Andrey’s personal archive

What do you think that can save people living with HIV from tuberculosis? What can be changed in the health system?

A very serious question, actually… I have many thoughts at once. People need regular examination. In general, if people cared about themselves, they would monitor their health. Ideally, if people visited the polyclinic regularly, it would be great. Due to the fact that I’m HIV-positive, I often go through surveys. But, for example, a person may wake up and feel bad in the morning, they think this is a hangover, and but in fact it is TB. Such person will not go to the hospital for a long time, because they are busy with other things. When I was sick with tuberculosis, I talked with other drug users. And they knew that I should always show up for treatment in the morning. I told them about tuberculosis, I distributed brochures from the AIDS Center and the TB dispensary.

In fact, you became a peer consultant at once.

I guess, yes. And some friends followed my example then. I do not know, maybe I got infection from them. But after our conversations I saw that people go to the health facilities and get examined. It’s a pity that now there is very little literature about tuberculosis. And there are few stalls in AIDS centers. We used to have these prevention banners before. And now, they are gone for some reason. However, people should somehow learn about socially significant diseases.

Do you think the early start of antiretroviral therapy affects tuberculosis?

On my example, I can say that I do not know. I was simultaneously diagnosed with two diseases and prescribed treatment. And I will say that I would not change anything in my life. My experience shows that tuberculosis is curable. And I started to take both therapies almost immediately.

What are you doing now and what are your plans for the future?

In early 2018 my wife and I registered a non-profit organization for the protection of the rights and interests of people living with HIV and other socially significant diseases, called “SOVA”. We provide self-help and peer support groups for PLWH and people who use drugs. We provide training on the treatment of hepatitis, on living with HIV, on the prevention and treatment of tuberculosis. Now we, together with the Oryol Regional AIDS Center, conduct HIV testing and assess the level of knowledge among drug users. We cooperate with state institutions and charitable foundations. I want to develop as a professional and still have time to spend with my family.

Thank you

Interview was taken by Natalia Sidorenko, representing the TBpeople network in the expert group of the Regional PARTNERSHIP Program. The mission of the network is “To unite people, to defeat tuberculosis”.

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