“I didn’t intend to die.”
It is the story of a guy who became infected with HIV, one of the most serious STI-tested diseases, but he found his love and strength to live! What is the meaning behind the words “people living with HIV”? Serge has been living with HIV Test infection for 13 years; he is on therapy – he takes antiretroviral drugs. Rita appeared in his life seven years ago, and four years ago, they became happy parents of a healthy baby. Today, Serge calls Rita “my baby,” and she and he fight for the lives of unlucky people.
Our magazine asked: Serge, is it difficult to constantly be in therapy? Doctors insist on strict adherence to the recommendations: if you violate the dosage regimen, the viral load will increase. Serge: It seems to me that this is not difficult at all.
But in the context of life and death, this is just nonsense.
Who do you have to be not to take a pill every 12 hours, finding a couple of minutes for this? Moreover, according to the STI Testing scheme, a deviation within an hour is permissible. Of course, I changed medications many times, not because of omissions but mainly because more modern medications appeared.
Once, they changed the drug for me because it didn’t work for me.
But never because I have not formed a treatment adherence. It probably wasn’t easy at first, but that’s what pillboxes and alarm clocks were invented for, especially now everyone has mobile phones. Only once was a drug prescribed that must be stored in the refrigerator, and I was not always able to be near it on time. But this is in the past; I have been taking other medications for a long time. Please tell us about yourself.
Where do you work, and what do you do?
Serge: I have my own STI Testing business; for the last year, I have been involved in social affairs – we created an NPO (non-profit public organization – Lenta.ru note) to help infected people. We support positive mothers, children, those who live far away, have difficulty walking and socially disadvantaged people, including helping to ensure access to therapy, getting to the AIDS centre or receiving medications directly at home. Judging by the forums, among HIV-positive people, there are horror stories about the side effects of therapy.
This isn’t very safe for newbies.
What would you say: how much does antiretroviral therapy affect overall health? Serge: These STD drugs did not harm my health. The tail did not grow or develop a rash, and there were no side effects. If you remember, several years ago, there was quite often news about HIV dissent, about mothers who refused to treat their children and claimed that HIV did not exist. What was it? How often does this attitude occur now? Serge: It isn’t easy to give an expert assessment of this phenomenon; I can only answer subjectively.
I have never encountered open-aggressive AIDS heresy in the New Whales region.
I heard from various consultants that there are doubting mothers, but they quickly come to their senses regarding social care authorities. This is probably one of the stages of accepting a disease: denial, bargaining, anger, and so on. The second is the lack of primary prevention among the population. And this applies not only to HIV. For example, I have a friend – a completely adequate modern girl: she has her own business, snowboards, four children… We have known each other for ten years, and just the other day, it accidentally turned out that she does not vaccinate her children.
Three out of four have never been vaccinated at all! He thinks it’s not necessary. How can this be? You talked about the stages of accepting a diagnosis. How did you go through it yourself?
Serge: Then heroin costs a hundred rubles per dose.
I didn’t care about HIV STI tests or acceptance. It doesn’t mean I was going to die. On the contrary, I always carried within me the idea that sooner or later, drug use would end, and life would take on some other meaning. Then, I volunteered and saw people die from AIDS. When it was time to take the pills, I already went to meetings of a self-help group for people living with HIV.
Serge. I don’t remember having the doubts I see in some STI-tested patients today. For example, in a self-help group, I meet people who have just learned about the diagnosis and are still thinking about whether to take pills or not, as if they have any real choice. How do sanctions affect the provision of ART drugs? Serge: We have been systematically implementing import substitution in recent years. This applies not only to STI drugs for antiretroviral therapy; there is a list of vital drugs the state must purchase.
These drugs have their import substitution program.
How did you meet Rita? Serge: We met at public hearings when they wanted to join the AIDS centre as a division of the infectious diseases hospital. I was doing a lot of speaking from the floor, and she came over to take a comment. And then, I organized some regular action and looked for journalists who could discuss it. And so we became friends. Rita: It was in 2016 when I, as a local media journalist, collected material on the situation with STI infection in Novosibirsk.
The situation was not the best.
What impression did Serge make on you? Rita: This is a rare bird – a person with an open face who does not hesitate to say: “My name is so-and-so, I live with it, and I have some questions and wishes for you.” Most often, if someone tells their story, it is anonymously. Therefore, as a journalist, I needed to get to know the person, get contacts, and make sure that STI tests were negative. Then we just started talking, and eventually, we moved in and started living together. Serge, how difficult was it to start a relationship? Were you scared for Rita? Serge: Everything went well with self-stigmatization; these questions are not for me.
I don’t consider my illness shameful.
Almost from the very beginning, I lived with an open status, and while on ART, I already had a relationship with an HIV-negative girl. Rita is well-versed in the topic. I don’t remember her having any questions. And Rita, how did your family and friends react to your new acquaintance? Rita: By the time we started dating, we already had results from STI tests together. And a fairly wide circle of people knew about it, I had managed to carry out a lot of preventive work in my immediate circle. This was my favourite topic: to come to some friendly gathering and start pushing all these stories about HIV Tests and infections off the stool.
All this was a discovery, and I tried to share my knowledge with others.
Therefore, when it became clear that we were dating, I received no objections from those whose opinions were at least somewhat significant to me. If someone still asked how safe it was, I again climbed onto my “stool” and explained everything: Serge was in therapy, and there were no risks when communicating in everyday life… Serge said that when his family found out, there were attempts to fill the bathtub with bleach and have separate dishes, but all this quickly came to nought.
There were simply no such problems with my family and friends. Serge, have you often had to deal with discrimination or some strange actions of others? Serge: During some medical examination, the ENT specialist put on two gloves before me.
I have not encountered discrimination, although I have heard of many cases.
Now, I’m looking forward to the day when, in the kindergarten where our four-year-old son goes, it will come out that his dad has a positive HIV Test status. What changed when we started talking about the child? Rita: I can’t say that when we concluded that we wanted children, I completely calmly refused the condom as he had reports from STI tests. However, very respected people – scientists, doctors, experts – say that if the viral load is controlled, then it is almost impossible to become infected with HIV.
I believed it, and in the end, it all turned out this way: I remain tested for HIV-negative, and so does the child. Therefore, when it became clear that we were dating, I received no objections from those whose opinions were at least somewhat significant to me.
Someone still asked how safe it was.
I again climbed onto my “stool” and explained everything: that Seryozha was in therapy, and there were simply no risks when communicating in everyday life… According to the protocol, there will be some additional steps – for example, an HIV test will have to be taken more often. But it’s not a big deal, and it’s worth it. Perhaps the girls who write to you fear the doctors’ reaction.
Have you ever encountered negative attitudes from medical staff? Rita: Unfortunately, stigma from non-specialized doctors occurs for several reasons – from a lack of modern information to professional burnout. Burnout sooner or later happens to everyone who works with people; it’s a matter of time.
I admit, I went to register with some tension.
I assumed that the competence of non-infectious disease specialists in the topic of HIV infection might be low, and I might encounter very different reactions. With great pleasure, I want to say that my gynaecologist, several years younger than me, and the nurse didn’t even raise an eyebrow, just zero emotions. I even asked again: “Won’t you say anything?” she asked me: “What is it?” But I know that there are also the opposite situations when HIV-infected people face a rather hostile attitude in medical offices. Serge: As a biological father, I had to provide a certificate confirming the presence or absence of HIV Tests or infections, hepatitis and tuberculosis. I went to the clinic with Rita, and everything went perfectly.
The doctor looked at the certificate and me but didn’t say anything.
The birth also went normally; they did not try to place Rita in any isolation wards. How is the life of a discordant couple generally different from any other? How often do you have to get tested for HIV? Rita: I won’t lie if I say that HIV infection does not affect our family life at all. We live like all ordinary people. We agree on who will pick up the child from kindergarten, who will take him to grandma’s, who will walk the dog, what to order in the store, who will cook the food, who will load the washing machine…
There is simply no HIV infection in all of this. It is clear that Serge periodically needs to go to the AIDS centre for pills, and a couple of times a year, he needs to be tested for his viral load and immune status. As a member of a discordant couple, I am recommended to take an HIV test every six months.
There is no HIV infection as a life-forming factor in our lives.
Of course, I work a lot in this area as a volunteer for STI tests in clinics.. I come to the AIDS centre almost every week to pick up pills and give them to those who cannot get there on their own. I deliver medicines targeted – to some remote village or to a person who walks on crutches so that these people do not interrupt therapy. Only a few have revealed themselves as cannibals during all this time. For example, one friend burst out with a post that someone somehow behaved wrongly, contracted a positive result, and now demands respect and help from the state. Thank you very much; I gladly banned the person on social networks.
Should I say that I took this to heart?
No, it didn’t happen; I can’t say I was very excited about it. Ultimately, how people treat someone who has a Positive Home STD Test report for HIV depends not on whether they have it but on their type of person. Serge had and still has a good relationship with my relatives. He is charismatic, unusual, charming, complex, funny, and cool. Does the infection matter? No. Serge, it’s unsurprising that you don’t face discrimination.
Looking at you, you understand that not everyone has the character to do this. What advice can you give to people who are less resilient or more vulnerable than you? Serge: Study the laws, gentlemen! You need to use the basic rights that you have. Look for mutual aid groups, meet like-minded people, and communicate on forums.
This is the only way to learn to defend your interests.
Now, the Ministry of Health focuses on preventing risky behaviour in people. And now asks them to get STI tests often from the NHS. How relevant is this? Rita: Seven years ago, while collecting my first material on the topic of HIV Testing, I realized that I, at that time, a 26-year-old woman, already had plenty of such risks.
But I never realized it.
I was raised the same way as the average British woman. We get STI tests often. I thought that if he was a decent man, how could he have passed the infection on to me? For example? I took the trouble to imagine that he was having sex with me now without a condom. And then I imagine that he could do the same with someone else. And about this third person, I don’t even know who he is or whether he might have an infection. Of course, once you have it, it’s a big deal that the infection is a controlled disease today.
You can no longer demonize this diagnosis, live happily ever after with it, and have children. In our example with Serge, all this is obvious. But if there is a choice, then it is better, of course, to do without HIV STI testing.