Pavel Lobkov:I don’t lie about Donbass, I don’t lie about Syria, why should I lie about HIV?
- Фото: Дмитрий Смирнов
СLet’s start from the very beginning. How did you find out that you were HIV-positive?
In 2003, I think, in May, Chanel invited us to film our show “Vegetable life” about French perfume industry. We were visiting plantations in Grasse, and as I was doing a standup I tripped and fell on a big rosebush. I never noticed that I had a little thorn stuck in my belly — somewhere between my jeans and my belt.
Three days later I went back to Moscow and it began to swell — looked like it was some kind of furuncle. I went through a quick surgery in a clinic without doing any tests. In a couple of days I was already in China, where I began to worry. My tiny scratch didn't seem to start to heal at all. At that time, NTV channel was attached to the clinic of the Presidential Administration on the Grokholsky street. There I had my belly dressed in bands and went through a number of other hardly pronounceable procedures. I said to them: have me tested for HIV and syphilis! — Why should we? — But I insisted: have me tested! Finally they gave me this little grey paper, meaning: there you go, if you're sure you want to.
СSo, basically, they literally did you a favor?
Actually yes. But I insisted on this test, because I was worried about the slow healing of the cut, I thought there might have been some problems with my immune system. This was the first time in my experience: before that, any wounds would heal up very quickly. That’s how I came to the idea I had to have my immune status tested. After all, I’m a biologist! I thought there might have been factors other than just a stray rose thorn.
СDid you suspect it could be HIV?
No.
СNot even a thought?
I just wanted to make sure.
СTo exclude the possibility.
Exactly. To exclude the possibility. So, I had myself tested and forgot about it, because it was October 10, 2003, when Vitaly Ginzburg won the Nobel prize. I was invited to his summer house, dacha. We got very drunk, and he outdrank me. He was 87 then… I got back home mortally drunk — you don't refuse a Nobel laureate offering you a glass of vodka. The next morning I got a call from a woman with such a robotic voice, you know: “You are summoned for a visit to an infectiologist”. Ok, maybe there’s some trouble with my enzyme-linked immunosorbent assay, let them show me something.
So I go over there, the security guards give way to me, I walk along these red carpets, take an elevator to the 6th floor. The door was open. Infectiologist is not the most popular doctor at the presidential clinic. Their patients are mostly afflicted with strokes, heart attacks, diabetes and the like.
The door is open, there’s no nurse. Only an elderly woman with her hair done like a challah bun. My health record is on the table in front of her. You know, some little troubles all over the years — physician, ear-nose-throat specialist, I’ve lost my voice once. The record book is quire big, and it has a huge red cross in magic pen all over its cover — with the words “HIV +” and also something like “to be reclaimed” or “to be disposed” — well, I don’t remember, some scary words.
“Pavel Albertovich, — she tells me in such a Soviet voice, — You’ve been diagnosed with HIV. Due to that fact, we have terminated your service contract, goodbye”. And this is in October, the window is open. If I was a girl…
СYou would leap through the window.
Well, you know, this is not a way to break this kind of news. It was the most important piece of news for me in 2003. “Goodbye. Your case will be transferred to the Moscow healthcare committee, and your file will be kept at the AIDS center”. It was 7 o’clock. I ran through these scary empty halls trying to find this deputy director who gave up on me by putting this giant red cross across my file. Of course I didn’t find anybody. Some nice security guards, a number of secretaries. There's something called deontological ethic. Deontology is the art of communication with a patient. For the record, I never got drunk that day. Since I worked on NTV channel and we had all telephone numbers, I called Vadim Pokrovsky: this redhead will never disappoint you. The next day I was in his office. He saved my life.
СDid you try to have it out with this clinic?
No.
СWhy?
Because you don’t have it out with Buddha. What could I have done, come to Boris Jordan (head of NTV) and tell him that they terminated my insurance plan because I'm HIV-positive? In 2003? Are you crazy? No. I knew I wasn't going to do anything about it.
СPokrovsky was the first one who came to your mind when you though about HIV?
Yes.
СAnd you called him.
Immediately.
СWhat did you tell him?
I said: hello, my name is Pavel Lobkov, we’ve met once.
СHe said: hi, Pavel.
“Hello, Pavel, come to me immediately”.
СNo, you told him: I’ve been diagnosed with HIV.
Yes.
СOn the phone?
On the phone, yes. “Come to me immediately”. The next day at 9 in the morning was in his office.
СWhat did he tell you?
He drew me a plan of how I was going to die.
- Фото: Дмитрий Смирнов
СMeaning?
Meaning that at the time my immune status was normal but...
СHow much T-helpers did you have?
1050 cells. Great immune status. I mean mine is even higher than average.
СAnd now you’re OK too.
He said: look, with this status you will live until you have 500 cells.
СHe was already saying 500?
He was already mentioning 500 at the time. It was in 2003, when everyone — you’re right — were waiting until it comes down to 350. We give you this therapy, with which you live for 5 years. Then the virus will become immune, and you’ll have your status decreased and HIV RNL level (viral load) increased. And viral load was pretty high then.
СIn the millions?
Thousands.
СYou don’t remember your first numbers, really?
Status was 1050, I think. Vadim has the numbers. At that time he had this woman, Marina Kholodilova, she’s been observing me through all these years. So, Vadim was wrong: I lived without therapy not for 5 years, but for 7 years. In 2010 I started to take medicine and the viral load decreased to undetectable level. Meaning I became less infected than some random guy from Bibirevo (Moscow suburbs — translator’s note), who's never been tested.
СWhat did Pokrovsky promise you then?
Then you have to change therapy, you’ll have your immune status increased. And then again, every 6 years.
СWhat did you feel when you first came to the AIDS center?
First impression: it’s a realm of death. Scuffed halls, secret upper floors, where they say patients die alone, with no one around them. The smell of cabbage soup and horror, library-type plants and floor cloth. The office of Pokrovsky was of the sort you see in old Soviet movies, like “Office romance”. And at the same time an unbelievable level of hospitality — I know, sounds weird. They answer all your questions, they find time for everyone.
What did you do after you left Pokrovsky’s office?
I was in some kind of haze.
СWhat happened in this haze and how long did it last?
Nothing. I had this idea I was going to die on the 15th of August in 2008. I had this dream once — on a St. Petersburg-Moscow train. This never happened, you know.
СWhen and how did you realize that everything was going to be fine?
First of all, I’m a biologist.
СAnd secondly, you’re a human being...
No, secondly I’m a biologist, and thirdly, I’m a biologist. I know very well that HIV is the most studied organism on Earth. More explored than fruit flies and E.coli.
My immune stem was fighting, the viral load was decreasing, I had nothing of what they call primary HIV reaction, which is having flu or diarrhoea for several months. I already knew I was going to live with that.
СHave you tried to find out where you got it from, from who?
No.
СWhy?
Because I asked Vadim — does it make sense? He said: “In 2003, epidemiological investigations make no sense. Everyone gets it from everyone. It's a waste of time, money and nerves. You have to treat your problem, not to play a detective”.
СWho did you tell about it after that?
My mom.
СWhat did your mom say?
“We've dealt with a lot of grief in this family, we can deal with some more". Dad didn’t know about it. He was a conservative person. He died, and I think, he'd never known until his death. We’d been hiding the fact. Next page >>
- Фото: Дмитрий Смирнов
СWhat were you saying at work?
There was this one time when I had to go through therapy. At first, in 2010, they prescribed me Abacovirum, very effective medicine… But it has this one trait: some people are hypersensitive to it. And I had a terrible fever — up to 42 degrees (107 degrees Fahrenheit), lymph nodes overswollen. I even spent two days at the hospital — the same hospital, with drop bottle. They cancelled Abacovirum. It was quite a shock to me — I thought that any therapy would do the same to me. But it was just that I was hypersensitive to this exact medicine.
So, when I had these problems, I was going to work and I was saying that I had some kind of cancer and that they changed my therapy to some other medicine. I was telling the truth — but it was not cancer. At the moment I had an allergic reaction — my face was red, like I’d been drinking all night long. I had to give some explanation, and so I told them I had cancer. Some kind of cover version.
СWho, beside your mom, knew that you were HIV-positive? You told me in 2010, as far as I recall.
Well, let’s put it like that: I told everyone who had to know.
СDid Kulistikov know?
We weren’t very close. But since Vladimir Mikhailovich Kulistikov was always close to the secret services, I believe that my health record from the presidential clinic with a red cross on it wasn’t a secret to them.
СHow did you change the federal [AIDS] center to the Moscow one?
I transferred at the moment when I had to receive my drugs. It was linked with some paper bureaucracy stuff — it was the first time I got my general health insurance certificate, Moscow registration and so on. And Pokrovsky said: well, it’s 500 cells, go to Mazus. They have free medicine. And my medicine plan was incredibly expensive, like 2000 dollars. I hardly could afford that money.
СIs there any difference between the Moscow center and the federal one?
Yes, there are even orchids instead of ficuses. The only thing: take me, I’m an almost perfect patient, always remembering when to come for prescriptions or tests. But I think about people, who are less accurate than me, — why not giving them notice when it’s time for tests? Short message could do.
СDid they immediately give you therapy?
No.
СWhy?
I was still under observation. The level was the same — 500. It decreased down to 416 only in 2010, and they prescribed therapy.
СThis is when you had an allergy to Abacovirum?
Yes. My first therapy wasn’t successful.
СYou came to the doctor, and she replaced Abacovirum. By what drug?
I took Zidovudinum with Abacovirum, and then Zidovudinum with Lamivudinum. And also an Intelence — thank God, we still import it, and not produce it ourselves.
СA good plan for that time. What do your visits to the AIDS center look like now?
Third floor, to Elena Lvovna. I get in touch with her through Viber.
СYou mean there’s no line for you to wait in?
No. There’s a strict rule: known people are serviced separately… But of course, spotting is possible. But you know, there’s a rule among HIV-positive people: we’re all on Twitter, Instagram, Facebook — anywhere! But they don’t take pictures. No, there’s no such sign, it’s just that people are united by one grief, and they don’t spot each other.
СDo you pay for the visit?
No, of course not. And I always to a double check. Since I’m a bilogist, I need a replication of the result. Because after the release of the data that the heart attack death rate was understated, and that they give any other diagnosis to people who die from a heart attack, because Putin said that people should die less from heart attacks, and they die less. That’s why I think: isn’t it understated? Double check is very useful, to undergo tests in two separate centers. I’m sorry, we all know what our Federal statistics service is like.
СHave you since then met any regular doctors?
No. In general, I’m rarely sick.
СWell, you said you had implants.
Yes.
- Фото: Дмитрий Смирнов
СHave you had in your life during these 12 years living with HIV any problems linked to that fact?
In 2005, I went through a routine proctological surgery at the clinic in Sokolinaya gora (one of Moscow districts — translator’s note). Great surgeons, I highly recommend. People would say to me: but they have HIV there! I reply: it is the only place in Moscow where there’s no HIV, because it’s absolutely aseptic. And only surgeries require that the HIV test is done. It’s such a hypocrisy that when the dentist treats your caries by drilling a tooth, he doesn’t request for HIV-test, but if you get implants, they do — there’s the same amount of blood!
At the Dental institute on Novoslobodskaya they told me: no, we won’t give you implants, we offer you partials. And I paid for these partials, but then I realised that my pronunciation suffers — and I work on air! Well, I’ve been carrying these partials in a cigarette pack for two years. When another of my teeth fell out, I realised I had to have implants. And then these professors told me that there was that nice guy who doesn’t care — I won’t give you his name, because he could be fired for that. The guy literally said: I don’t give a damn.
And Lena Orlova-Morozova (director of the clinic of the Moscow regional center for AIDS control) sent him links on American studies about implant survival among HIV-positive people. There’s no difference in statistics. He’s a smart guy, pretty reasonable.
СGood teeth since then?
Lower are ready, but I don’t yet have money for the upper ones.
СYou follow news in this industry and stuff. Are you satisfied with the medicine plan you get?
Let’s put it like this: I don’t care about the package — let it be wrapped in paper. I care about what’s inside this package. Today Vadim told me that they don’t test the things inside. We have data from respectable oncologist Alexey Maschan stating that import-substituting anticancer drugs have only 25% of active substance’s standard. Meaning they don’t give tigers enough meat at the zoo. And many cancer drugs are lifetime. So, long-term effects are not known to me. And short-term effects of import substitution are yet to come. Because I have the same immune status that I had before 2010 — maybe even higher, something about 750 cells. But I know I can tell you that from 2010 I’m less infectious that any potential person who has never been tested. As Pokrovsky puts it, you have to produce two glasses of saliva or a glass of sperm in order to infect someone.
СMeaning you had no complications related to the drugs you took?
Not now. But I still want to know what’s inside. Because immune system modulates slowly. We don’t quite understand what this medicine contains, and what it does not. Because the company “Farmsintez”, for example, is hard to google. I don’t understand how it is possible to produce quickly such complicated drugs as Tenofovir — it has a very complicated formula. I think we receive them from somewhere like Bangalore, where they dip it by spoons from the same bottle. But we can’t prove it!
It’s the same in other parts of the world.
But there are different production lines. First one is for the US, the second one is for the EU countries, and the third one is for everyone else.
СHave you become more careful about your health during these years?
Yes, sure, I pay more attention to my tonsils or lymph nodes. But regular doctors — they don’t require it. For example, I had a problem with my knee…
СBut you inform regular doctors that you live with HIV?
No. Don't ask — don't tell. In case they ask…
СAs a biologist, do you consider HIV-infection being a systemic disease serving as a background for a cold, for example?
Cold-related diseases — no. Because HIV-negative people, especially when they work 24 hours a day, catch cold three times a week. I catch cold one time in two or three months. And, due to the fact that I have very high immune status and immune system reactivity, I have fever very often. Cut my finger — 37,6 degrees. I’ve been like this since I was a child.
Would it be easier for you if you didn’t have to worry about being uncomfortable in discussing it with a regular doctor?
I’ve done it today. Now all doctors know. And I wanna see, if a doctor — well, in fact I don’t wanna see it, because I’m a normal person — if a doctor will touch me in rubber gloves. I’m making an experiment on myself. Next page >>
- Фото: Дмитрий Смирнов
СGreat. Why did you do it? It wasn’t a wild hair decision. When you called me this morning to ask if your coming-out would help the common cause, I thought you were drunk!
I’ve had a drink because I needed 100 grams for courage.
СBeen there. I know that. Why did you do that?
Enough lies.
СWhy?
When we repost anti-corruption posts of Alexey Navalny, we all are so beautiful, so great, such net hamsters. “My mom is terribly sick” — 148 likes. I’m tired of this culture of likes. I can’t keep it in closet anymore. This should alert all of you that there are people among you, that many people carry this infection. Maybe they don’t even know it. They carry it all around. Fathers and mothers of the families. Enough of this lie on a national scale. I don’t lie about Donbass, I don’t lie about Syria, why should I lie about HIV?
СYou can keep silence. It’s your own business.
It was spontaneous. Yesterday around midnight I had a call from the chief editor of the “Hard Day’s Night” show Ksyusha Kozhina and she asked if I could come as a science journalist of Dozhd TV to the show together with Vadim Pokrovsky. And it was like this: either I go as a journalist and ask a number of general questions, or I tell the whole truth. Then I called you. You advised me not to do it. But I did it. Sometimes we have to do things. Not for PR, though PR is very important here. It is important because, in the first place, you have to know what is going on in our country. You have to understand that HIV-positive people are not jerks, degenerates, dumbasses, hobos or drug addicts with syringe in their knees.
СBut there are people like that.
Yes, there are. But you have to understand, that any person, even the most noble one — and I don’t think of myself as such — could carry this infection. And live a long life with it.
It somehow all came together and I realized that if I don’t do it today, I will never do it.
СWas it some kind of relief for you?
No, it scared me.
СWhy?
Because I don’t know what tomorrow will bring.
СCan you make any guesses?
I’m afraid to make them.
СWell, now, when you scroll your Facebook feed…
I see my feed, I don’t see the feed of LifeNews (pro-presidential yellow media — translator’s note).
СDo you come in any contact with LifeNews?
Do the 86% come in any contact with LifeNews? I don’t even know if a cab driver will take me tomorrow. Or will people share a mug with me.
СDo you really think that you helped hundreds of thousands of people living with HIV in Russia?
Yes. Otherwise I would not have done that.
СWould this help you personally [if somebody else did it]?
Yes.
СWhy?
When a person finds out he has this diagnosis, he sort of incapsulates. He builds a protection wall around him, some shell, he keeps a terrible secret. All ex-prime-ministers use four security guards, because they all carry a state secret. In this sense, you are a carrier of a horrible secret. And it scratches you from inside, you know something that a lot of people don’t. And this provokes a situation of discomfort. I think that this type of coming-out is, in the first place, a liquidation of stigma — I hope so! And secondly… I can’t say I’m a very successful person. We’re sitting in a small, not a very well-equipped apartment. No gold, no furs. But enough. Middle class. I’m one of you. You could be in my place, I could be in yours. There are plenty of people who undergo no tests, they don’t have this internal alert. The best result I hope for my coming-out: tomorrow a lot of people will go and have themselves tested — why this little wound does not heal, why are their teeth decaying so badly? Why? The doctor doesn’t tell you — go and check yourself.
Back then it was pretty difficult, you had to get a number, you waited and worried. Now it’s only a test. Buy it in the drugstore. Don’t pay for a hooker, buy an HIV-test.
СWho was the first person to call you today?
Nowadays it’s all on Facebook.
СI see. But who called you first?
No one. All on Facebook.
СCome on, we’ve spoken on the phone.
I’ve called you. You called me on Facebook chat.
СSo, I was the first person you’ve talked to after the show?
Well, yes.
СIt’s very funny.
Sometimes it’s very important to simply hear a human voice. Because all these likes, shares, retweets and reposts — it’s all great, but basically we’ve reduced our communication to a couple of words — good, OK. I hate these “kittens”: “it’s gonna be fine, darling”. Today someone wrote to me: “Get well soon!” I’m not sick, why should I get well? Do you plan to give me genetical scissors to cut this shit out of my lymphocytes? You don’t have them. “Get well soon!” Three likes.
СHe doesn’t understand.
Yes. That’s why I did it today.
СTell me, during these 12 years, have you discovered that people don’t know anything about HIV? Or do they know something?
When in 2009 we were filming a documentary about infections, HIV in particular, I met the so-called movement of HIV-dissidents who think that immunodeficiency is a consequence of bad weather conditions — and then a mass of lymphotropic viruses attach to your lymphocytes. This is a trendy theory right now. But you can also deny that the Earth turns around the Sun. Yes, those things sometimes amazed me.
СBut these are AIDS-dissidents, I mean the normal people. They told you to get well today. They really do not understand.
I don’t know. My mom surfed through the whole Internet for information and by 2004 she was very calm.
СDid she call you today?
She did.
СAnd you’re saying it was only me! What did she say?
She is afraid of some neighbors who allegedly won’t do her injections, since she is a mother of an AIDSy. She said it was my decision and that it would be hard to live with it. Not just for me, for her also. Because she is surrounded by people who sincerely believe that Donbass is a part of Russia. With all due consequences.
СWhat did Sindeeva say? (director and owner of Dozhd TV — translator’s note)
The same things. It’s not her decision.
СBut it is a decision articulated through her channel.
I informed her that I would do it. Won’t it harm the image of the channel? No, she said after giving it a lot of thoughts. You saw it.
СYes.
No, there will be no harm. How many subscribers, all that sort of things — I don’t care about those things now. What I care about is that people who are living with this diagnosis now go and learn about it. Came down with tonsillitis — have yourself tested. Lymph nodes swollen — have yourself tested. A little cut doesn’t skin over — have yourself tested. The earlier you discover HIV, the longer you will live.
The global pharmaceutical industry is currently at a stage where the longer you live, the longer you live. The longer you prolong your life, the higher is the probability that they will find a magic potion.
You can divide the world in two eras. World War I — a great number of gas gangrenes, deadly pneumonias, there was also a so-called trench fever. World before penicillin and the world after penicillin. The earlier you start your therapy, the more chances you have to witness the discovery of a new penicillin. Are you afraid of plague? There’s no more plague. That plague that once killed half of Europe, there’s a pill for that now. Tetracycline, it’s called, you take two pills and that’s all.
СI understand that you don’t know what to expect from future. But when you were making this step, you had to think of how it would play out?
I don’t want to reveal the possible options for actions to my enemies. I came up with about 20 options.
СOK, I’m not talking about the enemies. I’m talking about you. I had my own coming-out, I survived it, and now I see that enemies remain enemies, and friends remain friends. And you remain yourself, and your life will go on. But it will change.
Yes, I’m aware of that.
СDo you imagine how it will change?
No. I will continue to work at Dozhd TV.
СAre you planning to take part in AIDS activism?
If someone invites me as a public person for PR-campaigns, I will try to make sure that these campaigns are humane, to make people see that HIV is controlled… Near my place there’s this only shop, and a pack of 12 condoms costs 600 rubles there. In front of this shop stands the dormitory of the Russian State Humanitarian Institute. There are a lot of young boys and girls. And every day I witness the same scene when I come from work: a boy and a girl buy champagne, see the condoms and their price, take their champagne and leave. Because the price of condoms is the same as the price of the champagne. And this is where the state should intervene, not the bearded priests. There should be subsidies, free condoms at schools and colleges. Because 18-year-old boys and girls will spread this through heterosexual contact — they are extremely sexually active.
СWhat does the Russian AIDS discourse lack today?
We have to draw up the balance. You have AIDS — this doesn’t mean they can’t share a mug with you, but on the other side, if you are HIV-positive and on therapy, it doesn’t mean you don’t have to use protection. It is a delicate balance, and we have to think through the PR-strategy. And it has to be developed not by the publicity agencies, but by people who understand and live with it. And I think I could help.С