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Campaign Leaflet

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This is a translation of a bilingual booklet prepared in Ukrainian and Russian, by the international medical humanitarian organisation Medecins Sans Frontieres (MSF) with the support of the Ministry of Health of Ukraine. The booklet was prepared as part of the MSF Mass Media HIV/AIDS Solidarity Campaign "You Should Know More About HIV/AIDS," launched in Kiev, Ukraine, 19 March 2001.

In this booklet, we would like to speak about HIV/AIDS, a topic which features regularly in our everyday lives. The subject arises in newspaper articles and magazines, is discussed on TV programmes and on the news, and crops up in discussions with friends and colleagues. We find ourselves asking questions like: What kind of disease is it? Where is it from? How can it be transmitted? How far has it already spread? How is it cured? How do you protect yourself from it ?

When we encounter the topic, we experience a variety of different feelings, ranging from total indifference to worries about our own health and the health of those people close to us. For some of us, who have acquaintances or people close to us that have become HIV-infected, this problem has become a personal issue. We find ourselves asking questions like: What should we do now? How should we help this person? How should we discuss the issue with him ?

In this booklet we will give you reliable information about HIV and AIDS to help you to make responsible decisions in similar situations. We will also give examples of personal experiences from people who have been (or are now) in contact with people living with HIV and AIDS. For some of them this person could be a colleague, for others - a friend, a close relative or someone whom they hardly know. These examples depict the feelings they experience, questions that arose in these sort of situations and the decisions that they made. We hope that this information will help you prepare yourself for a situation in which you might encounter a person with HIV or AIDS.

So, what is HIV?
The disease which is caused by the virus Human immunodeficiency virus (HIV) first came to the attention of doctors world-wide in about 1982. In 1986, it was officially declared that HIV causes the development of Acquired Immune Deficiency Syndrome (AIDS).

Today, the scientific and medical world pay a lot of attention to the study of HIV. The nature and structure of the virus has been defined, and its strengths and weaknesses have been well documented.
HIV belongs to the retrovirus family ( the 'slow virus' group). It has a spherical form and its 'core' is protected by a cover, which is fully adapted to existing in the human body. However, in an outside environment, it is very unstable. That is why beyond its own habit, HIV quickly perishes and can not travel in the air and in water.

Once in the human body, the HIV penetrates certain blood cells called T- lymphocytes. These cells function as the body's 'warning alarm system', identifying harmful micro-organisms and instructing other cells to eliminate them. HIV penetrates T-lymphocytes and subordinates them to its own genetic programme. The 'watchman' cell then starts serving as a 'factory' for HIV virus reproduction. At certain moment the cell overfills with virus particles, explodes and dies. When this happens on a large scale, the number of T-lymphocytes in the blood sharply decreases and the human immune system has more difficulty dealing with infections, resulting in the development of acquired immune deficiency syndrome (AIDS).

HIV can be detected through a special blood test approximately three months after infection. If at least two different tests confirm the presence of HIV antibodies in the blood, then a person has HIV-positive status and is considered to be HIV-infected.

The development of the virus in the human body passes through several stages. As previously mentioned, HIV belongs to a 'slow virus' group, which is why it remains a long time in the human body revealing almost no signs of its presence. Between one and three months after HIV-infection, the virus will have replicated enough to be detectable. At this stage, people usually feel the signs of an acute viral illness which can last two or three weeks. This stage eventually passes and the person feels normal again.

After that follows a long period of so-called 'asymptomatic stage'. During this stage a person shows no symptoms, feels normal and can lead his/her usual life-style. This period can last from several months to more than ten years. The duration of this period depends on many things from the physiological peculiarities of each person's body and the life-style he/she leads to the quality of food he/she consumes and his/her emotional state. The virus is not dormant during this stage, but is busy replicating. It can be detected in the blood and can be transmitted from one person to another if people have unsafe contacts.

After the 'asymptomatic' stage follows a period of several months when a person suffers from swollen glands and various minor infections including oral fungal infections. Often, this stage can also proceed without any serious health problems and a person can keep working as normal and continue his/her usual lifestyle. As in all stages of the illness a person is infectious to others during this stage and must only have safe contacts with others.

The stage which we call AIDS, begins when the immune system can no longer cope with various infections - normally infections of the lungs, the intestinal track and the central nervous system - which previously never posed a great threat to the body. These infections are often very dangerous and sometimes fatal when a person also has HIV infection. The person generally begins to feel ill during this stage. However, this stage is only reached several years after becoming infected with the virus and some people reach this stage more quickly than others. In a very small group of people, this stage is never reached and they seem to be able to live with the virus indefinitely.

Therefore, you can see that HIV and AIDS are not the same. As it is clear, HIV is a virus, which leads to suppression of the immune system, while AIDS is a mixture of health problems caused by a lowered immunity.

During the AIDS stage, the body's immune indicators are decreasing while the amount of virus produced by the HIV factory located in the immune system cells is increasing. It is detected through a blood sample given by the HIV-infected person.

At this stage, therapy is now urgently needed to slow down HIV activity and to stop the virus multiplying in the body. If such therapy is applied, then it is possible to keep the virus amount at a low level and it allows the human body to function more or less normally.

What does all this mean for a person living with HIV?
This means that for many years he/she will be almost as healthy as other people. He/she will remain a carrier of the virus but nevertheless can lead an absolutely normal lifestyle and what should also be understood is that he/she will not pose a threat of virus transmission to other people during all forms of safe contact.

Here, we have come to the next question - How is HIV transmitted? When is contamination possible and which forms of contact with HIV-infected persons are considered safe?

The majority of forms of contacts with HIV-infected people are absolutely safe. Of course, many people are scared of contamination, but in the majority of cases these fears are unfounded and exaggerated as there are no actual reasons for contracting HIV.
All forms of HIV transmission have been scientifically proved and well researched.

HIV can get into human body either through the blood, sperm, vaginal discharge or breast milk. Therefore, virus transmission is possible via:

· using non-sterile syringes or needles for injection
· infected blood transfusion
· sex without a barrier
· from an infected mother to her child during pregnancy, delivery or breast-feeding.
These are the situations when safety must be a pre-requisite.

The following everyday contacts with HIV-infected people are safe:

You can not become infected through the air i.e. coughing, sneezing, staying in the same room - because, as mentioned above, the HIV virus is very unstable and perishes very quickly once outside the human body.

It is not possible to become infected through insect bites - HIV does not survive in their stomachs
For the same reason it is not possible to become infected through contact with domestic animals.

You can not get HIV when sharing crockery (forks, spoons, cups), bedding or towels with an HIV-infected person, as HIV is very unstable outside its own environment.

You can not become infected when sharing a bathroom.

You can not become infected when using common bath, pool or sauna - during almost twenty years of tracing the virus specialists, have not registered any such cases.

Your child can not become infected if there is an HIV-infected child at the same kindergarten or school - normal everyday contacts do not bring any danger of contamination. Medical procedures in children institutions are performed by qualified medical workers who know what they are doing.

Moreover you can not become infected when you hug your HIV-infected friend or shake his/her hand or even kiss him/her.

As for situations when HIV transmission is possible, infection can be prevented. You should keep in mind two things:
· Any instruments (needles, syringes), with which you inject yourself or someone injects you, have to be disposable or sterile
· Any sexual contacts you have must be protected and safe. This means using a condom or other sort of barrier protection.

You always have to remember that it is you who ultimately holds responsibility for your health, and that you have the right to demand the maintenance of hygienic norms during any medical procedure. You also have a right to obtain information about what procedures you will undergo and in which way your safety in terms of HIV transmission will be guaranteed.

If you are concerned as a parent about precautionary measures taken by medical personnel at your child's kindergarten or school, you can discuss the procedures with its administration if that will make you more confident. For example, in some kindergartens, representatives of a parents committee appoint a responsible parent to be present at all injections and to monitor all the nurse's actions.

When speaking about safe sex, it is important to bear in mind that there are rules, which when observed, can secure your and your partner's safety. The rules are as follows:

It is absolutely safe:

· to kiss, even with deep 'French' kiss
· to lie together, to hug
· to caress and massage each other
· to practise mutual masturbation.

It is very important to use a condom when practising any form of penetrating sex.

It is necessary to keep in mind that for the prevention of sexually transmitted diseases you have to observe more precise precautionary measures. Try to obtain more detailed information about this.
Moreover do not forget that you can refuse sex if you do not want it or are not ready for it.

Is HIV curable?
Unfortunately, modern approaches to HIV-infection treatment only suppress virus replication in the blood, but can not remove HIV from the human body.
Some drugs exist that stop the virus from replicating. The application of these drugs is called anti-retrovirus therapy.

A doctor makes the decision about whether it is suitable to start therapy on the basis of blood-test results. When there is a high level of virus in the blood and a low immunity indicator it is time to start. At this moment, the application of the anti-retrovirus therapy significantly decreases virus replication in the body, which restores the immunity level and allows the body to function normally.

Anti-retrovirus therapy for future mothers and their children also exists. Special methods can decrease the infection rate of newly-born children from 30% to less than 1%.

Unfortunately the high cost of anti-retroviral drugs and necessary diagnostic methods renders them inaccessible for the majority of HIV-infected people in Ukraine at present. The duration of human life in the final stage of HIV infection (or AIDS) without access to anti-retroviral preparations can be as little as one year.

A presidential decree "Prevention Measures against the Development of HIV-infection epidemics in Ukraine" includes a component "About providing HIV-infected citizens with Necessary Medical and Social Aid". Hopefully this means that the state will soon be able to provide all its citizens with the necessary test and medicines to make living with HIV a reality for the thousands of people infected with this virus in Ukraine.

Several international organisations in co-operation with the Ministry of Health of Ukraine are campaigning to improve access to essential drugs with an aim to reduce the cost of drugs to a level affordable to the majority of the country's citizens.

The Co-ordinating Council of People with HIV/AIDS Network has been created. This body struggles for HIV-infected people rights, including their right for medical and social aid.

But when speaking about helping people living with HIV/AIDS, we should not forget about society's own support role and the support role of those people who are living close to people living with HIV/AIDS.

Each person experiences different emotions when confronting HIV/AIDS situations. For some people it is an abstract topic, and they are interested mainly in the issue of how the virus spreads and how contagious it is. For others, the topic only arises during conversations about someone they hardly know and is only gossip. But for some people this is a serious and vital question, because the problem might have touched someone close to them - a friend, colleague, relative or even just an acquaintance.

Then, people experience many emotions and worries, because he/she has to answer many questions at once: What does it mean for me? Can I keep in contact with that person? How did he get infected? What will happen to him? How should I speak to him? Should I speak to him about his disease or should I avoid the topic? What does he want from me? What can I do or what do I want to do for him?

We suggest you read the stories and statements from people, whose colleagues, friends and relatives turned out to be people living with HIV. You can see how they responded to these questions and what decisions they took when these difficult situations arose.

Lena, 26
I sorted myself out with a new job. I was madly happy: a new job after several months of unemployment, young people in the office, good conditions. And then suddenly, after a couple of days, I found out that someone in our office was HIV-infected. A slim girl of my age, no different from the others. For me it was my first ever encounter with an infected person - this wasn't something on TV or in the leaflets, but actually in my life!

At first I felt a huge sense of pity and immense fear. This feeling of pity was initially so strong that I used to start crying even thinking about the girl. I felt so scared. I was afraid about becoming infected and I couldn't cope with being so scared, despite my education, all the literature I've read and all the information I've received. I was extremely tense. I got hold of about ten books, and devoured them all week. However, my fears remained.

I decided to talk about how scared I was and how bad I was feeling with a person who had a medical education and who had worked with us. I needed to consult a professional who knew about the problem and who could voice those things that were written in books.
Then everyday normal life set in. I got used to the company and got closer to my colleagues including to the infected girl. Step by step, the stress, fear and pity went away. They have been gradually replaced by normal human relationships: I can resent, feel joy and gossip with her. We became friends. Now I see her as a normal person, just like all of us, who may need our help at a certain stage of her life. Whether the surrounding people help her or not - this is a personal decision, a moral choice, which we have to make at a certain moment of our lives.

Alexander, 42
Somebody told me that a friend of mine was HIV-infected. It was painful news. We've been good friends and I was afraid about our what would happen to our friendship in the future. I would not like it to end because of this. Of course, I was afraid of becoming infected, although I already knew quite a lot about HIV from newspapers and magazines and knew how the virus was not transmitted.

We kept in contact, I kept meeting with her and her family, and as time passed I started looking at things in a more simple way. Our relationship didn't change. How the people she was close to behaved was useful for me. I felt encouraged seeing how her relatives and friends showed no fear. "The devil is not as frightening as people draw it."

But I'm glad that when I found out that my friend was HIV+, I already knew a lot about HIV and how it is transmitted. Otherwise it would have been difficult for me to deal with my fears and I would not have known how to re-act to the situation.

Taras, 22
I first encountered an HIV-infected person when I was 12 years old. A new boy joined our class at school. Gossip spread like wildfire, that he was sick with a disease. Everyone was terrified and in shock; we knew little about HIV and AIDS then.

Everyone rushed to avoid the boy. He was like an outcast. No one greeted him or talked to him, everyone was afraid of him and looked at him like he was a leper. In the canteen where the whole school dined, he was given a special plate and he always sat alone at the table.

I remember that he was a clever boy, but that he had trouble studying. I think it was because he was abandoned by the class and the school and spent so much time in solitude at his young age.

I can remember seeing his eyes while he was standing at the blackboard, looking at us with fear, helpless and unprotected, not knowing the answer to the question, his eyes - big, black and praying...

Now when I am ten years older, my attitude to HIV-infected people has totally changed. I've learned much more about HIV and AIDS; a few of my friends and acquaintances have died of AIDS. But even now, so many years later, I sometimes encounter the same attitude towards people with HIV/AIDS as my class had when this boy arrived. I personally would like people to learn more about HIV and AIDS and not to repeat the mistakes of ten years ago.

Marina, 19
When I first found out that someone in my circle was HIV-positive, I was scared. Could it really be true? That young guy, who I had met just two weeks ago and who made such a good impression on me, had HIV ?! It was a shock. I had never met an HIV-infected person before. The whole thing seemed so remote and unreal.

I found out that he became infected while using drugs. This was too much. I had always feared drug users and had never talked to one. But my impression of this guy was so different ! He looked so absolutely normal!

It was quite a task for me to overcome my fear. He was part of our crowd, and I used to meet him every other day. In a way, this was useful, as I gradually understood, that my fear was caused by stereotypes, and that reality was different. It was good for me to see that he is a normal guy, that he has a job and behaves in a normal way. He even told us a lot about HIV and AIDS because none of us really new what they were.

Now it's much easier for me to communicate with him. We are not very close friends but I am not afraid any more and feel all right being with him.

There are some moments that bring together the feelings of people who encounter an HIV-positive person. A lot of people feel scared at first, they are afraid of becoming infected with HIV. This is a normal scenario. It gets much easier when people learn more about HIV and AIDS. Most people feel greatly encouraged when they see other people communicating with an HIV-positive person naturally and without any fear.

It is also very helpful to talk to a trusted medical professional who can confirm or disprove the information people get from books or the media. Also, for most of the people with whom we talked, it became easier to communicate with their HIV-positive acquaintances when time passed and they had had time to get to know these people better.

Here is a story of a woman, whose daughter got infected with HIV.

Anna Nikolaevna, 48
I knew no more about HIV than other people. Only that this is an incurable disease and that there is no medication. I also knew about the ways of transmission.
When I learned that my daughter had become infected, I ,of course, felt terrible.
I wasn't scared that my daughter would infect me, but I immediately went to consult with the doctors. They told me that HIV can not be spread through usual everyday contacts. After that I read a lot of literature about it.
My biggest desire was to uphold the mood of my daughter. One can live with this disease for a long time, but it is important for the person not to feel desperate and alone. Those nearest to her should see to this.

I think that I've come closer to my daughter since then although we try to limit talks about her disease in the family. But we monitor the medical news and are learning how to support the body during this disease. We pay attention to our health and lead a healthy lifestyle. And that is it.

However communication with people living with HIV and AIDS doesn't always result in mutual understanding. Different problems can occur from both sides. Then, it is good if parties can find an acceptable compromise, a form of communication that is comfortable for both sides.

Maxim, 20
I have an HIV-infected friend. We used to be quite close. But when he learned that he had HIV, he fenced himself off, and our contact stopped. I didn't want that. It's not because I changed my attitude to him, he wanted it to happen himself. He decided for himself, that everybody would turn their backs on him. I don't push myself on him, I'm just waiting for when he is able to communicate with me again.

Olga, 33
For me the problem is not if the person has HIV or not, but how someone behaves. If someone treats me normally, why should I not treat him or her normally as well?

For many people, how to talk to a person living with HIV and AIDS becomes a big problem. How do you start a conversation? And should I talk about it at all? Here are a few opinions on this:

Andrey, 41
When I first met an HIV-infected person, I felt a sense of discomfort, similar to when one finds oneself in an unfamiliar surrounding. You do not know the code of conduct, how to start a contact, what to say - what's possible and what's prohibited. What can offend or hurt.

But as it turned out later, its not that different from regular dealings with HIV-negative people. The main thing is to be yourself. From my experience it's better not to raise the topic of HIV yourself. If the person wants to, he or she will tell everything themselves.

Anna, 28
For a long time, we didn't talk to my HIV-infected friend about her disease. It's not that I was afraid to ask questions, but a situation where such questions or a discussion would have been suitable, simply didn't occur. Once, a discussion occurred just by itself. We had a very good talk. I ask questions and answered her questions openly. And you could see that she appreciated my understanding and interest.

Lena, 37
I think that we should only speak to an HIV-Infected person about his disease if he|she wants it, and then only to the extent he/she wants it. If he doesn't - then better not.
Besides HIV-infection is not the only topic you can discuss with people who have this problem.

Dmitry, 35
If a person needs to talk about his or her condition - he will start the conversation himself. If you really need to talk about it? Then just go up to the person and say: "I know that you've got HIV. Do you want to talk about it?" The person will always tell you if he doesn't want to talk about it. Just don't put pressure on him.

People don't always want to speak about their problems. Nevertheless, you might feel it is important to get answers to your questions. If you manage to ask these questions, it might help you to speak to your HIV+ acquaintance about things that worry you, to help you understand each other better.

We would like to show the point of view of a person living with HIV. Perhaps, an HIV-infected person can express better than anybody else, what he feels about the attitudes of people around him and how he would like his relationship with them to be.

Igor, 27
There is an association in society that HIV is a negative phenomenon and that all HIV positive are bad people, that HIV is a disease only affecting people from risk groups. But other people also get infected. A humane attitude from others, reduces the fear of people with HIV and makes dialogue possible.

I think this can be achieved by giving people more information.

As regards peoples' reactions to the information that you are HIV positive - here everything depends on peoples' perceptions. A lot of people are afraid. Even my best friends now visit me less often.

HIV positive people lead absolutely normal human lives. But most of the people do not know that someone who has HIV can live a full-fledged life for quite some time. HIV positive people have a very different opinion about their disease than the people from mainstream society.

We are not falling to pieces. I could say today that HIV has even improved my life: I do not smoke, I do not drink alchohol, I do not use drugs, I welcome every new day.

I would like to see a more humane attitude in people. I cannot demand it, but it would be good if people at least have more information.

I don't need pity, I want people to treat me as a completely regular guy. And to not remind me. I just want to be myself.

I usually have to educate people myself, to tell them about the virus.

A lot of people change their attitude after meeting people with HIV. This works for sure.

When one sees an HIV positive person for what they are, a completely regular person, their attitude changes. He or she can see that this is a normal and not a dangerous person.

Understanding is needed. Understanding is knowledge about the problem and treating people with respect.

Not everybody is ready for close contact with an HIV-positive person. Everyone has the right to choose how to deal with different people that they comes across in his life.

If you cannot accept your HIV-positive colleague or acquaintance now - just try not to cause unneeded pain in him by blaming or lack of understanding. Try to get as much reliable information as you can and base your decisions not on rumours or conjectures but on real facts.

Contact details for organisations which can provide information about HIV and AIDS are mentioned in the original Ukrainian/Russian version.