A shameful disease

Hepatitis is still regarded as ‘a shameful disease’ in Azerbaijan. And people learn about it more often by chance.

Hepatitis is often asymptomatic and is detected only when it’s too late. According to the official data, there are 2,900 hepatitis patients in Azerbaijan. However, these statistical data have been obtained from hospitals in a centralized manner and they mostly reflect the number of chronic patients or patients with acute extensive-stage hepatitis. The exact number of people infected with hepatitis can’t be established.

It wasn’t that easy to find a character for the article about hepatitis. Every now and then, my acquaintances were writing to me in privy in a conspiratorial way: ‘I have an acquaintance infected with hepatitis, but, you know, she/he isn’t going to talk about it.’

Eldar. Hepatitis С

I met Eldar in a roadside diner, the one that allows to warm up with a cup of hot tea and have some ‘home-cooked’ meal on the run.  There is a shot glass of vodka and juice in front of him. He is nervously tapping fingers on a rough table. He is speaking slowly, carefully choosing his words.

“Eight years ago, I fell down the stairs and broke my hand. I went to the injury care facility. They did some tests, which revealed that I was infected with hepatitis C. My wife and children were immediately examined and they were tested negative. Now I think that it was then that I learned about it then and nobody knows, for how long I’d been infected.

A doctor in that very injury care facility recommended that he should undergo treatment:  “He started enlisting medical preparations, saying they were to be brought from Turkey, that they cost AZN6,000each and that he couldn’t guarantee full recovery. I promised him that I would think of it. But my liver functioned well. Though it’s true that I was really very scared in the beginning. I started keeping a diet, I excluded all spicy and roasted food, as well as alcohol. A nurse in the outpatient clinic used to tell me: ‘Take it easy, don’t be afraid, live as if there’s nothing’.

A few years later, Eldar’s condition started aggravating. There was excessive accumulation of fluid in his abdominal cavity. ‘My mother noticed it and told me, my belly was growing. At first I was laughing the mater off, saying ‘Mom, I’m just getting older and developing a pouch’.

Having looked at the ultrasonography results, the doctor told Eldar, the still were chances to save his liver.

But I couldn’t undergo serious treatment: “I have to stop drinking, but I can’t do that. Once I leave the outpatient’s clinic, I immediately go to a shop for a bottle of vodka.

Eldar recently had to visit a dentist and his friend recommended him an Iranian doctor. “I visited him once, and the next time I turned to him, he told me: ‘Why didn’t you warn me that you were infected with hepatitis?’  It turned out that they had some instrument to check the patients. I was very upset. I told him: ‘You should have asked me, whether I was diseased or not, in advance.’ And he responded: ‘No, it was you who should have warned me.’ And I told him: ‘Am I supposed to go around crying out loud about it? Should I also pin the David’s Star on my sleeve?’

Aytyan. Hepatitis B

While we were talking, Aytyan was feeding her child. A baby talk could be occasionally heard in the handset. She willingly agreed to be interviewed, making no secret of her disease.  “I got infected with hepatitis B when I was about 11, says Aytyan “I have no idea, how it happen. I didn’t undergo any surgeries, neither did I visit a dentist. Probably I once cut myself accidentally in the yard or something like that.

She got on to it quite by chance. “At first I experienced general fatigue, nausea, as in the case of common poisoning. Then my mother notices that the whites of my eyes turned yellow in color. I immediately consulted a physician and got tested. My liver was enlarged and I was recommended to check in to a hospital for a fortnight.

Aytyan wasn’t ashamed of her disease. “I thought: ‘Well, so what that it’s hepatitis, it’s same as many other disease, like flu or something like that. Besides, there were people infected with it in my environment.

Nevertheless, neither her present friends, not her husband’s family, are aware of her disease. “He learned about it just recently, when we were going to have a baby and we got tested.  She says, she leads quite an ordinary life, not much different from any healthy person’s one: “The only exception is that I can’t donate blood. She gets tested from time to time just to be on the safe side.

Sevda. Hepatitis С

Sevda learned about her disease by chance. “It happened so that my husband and I couldn’t have a child for quite long. We turned to the Adoption Committee. A procedure there requires numerous checkups and tests. That’s how I learned that I was infected with hepatitis C. It came as a great shock to me, I had absolutely no idea of hepatitis.’

“There was no one who could explain at least something to me, everybody just scared me: To cap it call, the Health Ministry employee, who accepted my documents, told me: “Darling, just forget about having a baby. You’d better undergo treatment, otherwise you will die in your prime.’ The woman was convinced that she suffered an incurable disease.

Sevda turned to a renowned hematologist. Without batting an eyelid over the fact that the diagnosis didn’t quite match his field, the doctor gave her referrals to ultrasound and tests.

“As far as I remember, the sum amounted to AZN360 (about US$230).  However, a physician, whom I always visit to get an ultrasound, got surprised and told me that in order to identify liver condition through ultrasound one’s liver should be practically destroyed by hepatitis. Sevda suspected that the rest of the tests might not be required.

Finally, Sevda found a hepatologist, whose interview she had chanced to read on the Internet. “He looked through my test results and said: ‘You aren’t sick. Here’s the list of products that you can eat. Keep a strict diet to avoid activation of the virus.’ On the other hand, the Health Ministry staff warned me: ‘He is telling that everyone. You’d better undergo treatment, it’s very serious.’ I was at a loss.

Sevda claims, people have little information about hepatitis and the healthcare system employees often take advantage of it. “I believe, there are decent doctors, but the system works so as to throw a scare into people and make them spend as much as possible on some useless tests and drugs.

Zaur Orudjev, a therapist-hepatologist:

“Hepatitis is regarded as a shameful disease in Azerbaijan, since earlier it could be more often found in drug addicts. Disposable syringes have changed the situation. However, people still conceal the disease, often due to misconceptions about transmission modes.

There is state-run program in Azerbaijan, under which all newborns are vaccinated against hepatitis B in the maternity houses. However, parents aren’t urged to get vaccinated and children aren’t revaccinated either.

Hepatitis C is fully curable. There are treatment methods with milder side effects that take 3 months, rather than 1 year (as it used to be earlier), and cost AZN3,000 (US$1,720).

There is a serious problem with awareness of the disease. Hepatitis patients refer to themselves as the ‘carriers’ rather than the diseased. And that wording is frequently used by many doctors too. In case of Hepatitis C, there is no ‘carrier’ stage as such. As for Hepatitis B, people are mistakenly diagnosed as being the ‘carriers’ without any relevant tests.

Medprosvet Facebook Public Group, set up on the medics’ initiative, tries to deal with this problem. It offers free consultations, organizes various campaigns related to medical examinations with discount or free of charge.

Due to costly medical services, the preventing medical examinations (checkups) are not a common practice in Azerbaijan. Therefore, people often found out about hepatitis at the dangerous late stages.

Similarly, many cannot afford undergoing hepatitis treatment. The state-run hepatitis program applies outdated interferon preparations, as well as Ribavirin, with the efficiency rate amounting to 15-12%. Treatment using modern drugs is obstructed by the lack of medicine registration and the patients oftentimes have to search for them abroad.

Gulnara Agayeva, Chairperson of the Hepatologists’ Association:

Screening tests that were conducted in Baku in 2010-2011 revealed that 6-8% of the population were infected with Hepatitis B and C, which is a rather high rate, in general. The majority of cases were detected in the areas with active drug traffic – border with Russia, southern provinces – Masally, Lenkoran.  The infection rates are also rather high in such big cities as Gyanja and Mingechevir. But the average infection rate makes 4%.

Cunning of hepatitis is that no signs of liver disorder could be observed until the very last stage, when it is already too late. Given the present-day pace of living fewer people pay attention to such symptoms as: easy fatigability, abdominal heaviness after having one’s meal etc. Therefore, everyone, irrespective of one’s age and gender, is recommended to undergo hepatitis checkup annually, same way as vehicles undergo technical inspection.