Conversation with HIV-positive person during the lunch time:

- It may sound ridiculous but now I live a better life than I used to – told me a cute boy in black sweater with a badge on his breast “All-Ukrainian network of people living with HIV”.  The conversation with Vyacheslav became a real revelation to me. PLWH are people living with HIV and we used to treat them as condemned ones.

We were sharing the same table at the restaurant. To gather HIV-positive people and journalists for informal communication was the main idea of the press-tour organized by Elena Franchuk ANTIAIDS Foundation and All-Ukrainian network of people living with HIV. Despite many facts it is more interesting to talk to someone who is HIV-positive and who learns to live with it every single day than to read about AIDS in Internet or to listen to the preventive lectures.

- Believe me, HIV is not a verdict – persuaded me Vyacheslav. – Having HIV you can live a long and happy life. The ex minister of culture of Great Britain has recently admitted that he has been living with HIV status for 17 years. Certainly, it is important to know your HIV-status and to start ARV therapy. It took me some time before I decided to get tested in spite of having many HIV-positive friends. Afterwards I was shocked and depressed. But in the psychological support group I handled that problem quite easily. At the same time I have settled many of my psychological problems! Now I know for sure: I’ve lost nothing in my life. To the contrary I gave up using drugs, I don’t drink alcohol, I don’t smoke, I had a lot of new friends and my new job that I really like….    

- What is your occupation?

- I have a higher construction education. But I didn’t work as a constructor because of the drug addict. Now I am a social worker – in All-Ukrainian network of PLWH I am responsible for nonmedical care at home place This includes both household maintenance and legal support… 

- What are the most common problems faced by people living with HIV/AIDS?

- Recently there was a precedent in New Sanzhary: HIV-positive person won the trial and was restored at his previous workplace.  He worked as a driver of chief editor of the local newspaper. When the boss discovered about HIV-positive status of his employee he fired him immediately. After the trial, the chief editor was dismissed. The same proceeding is to be initiated in Kiev. Very often HIV-positive people are not serviced in proper way by care providers or they simply place HIV status stamp on the medical card.  The society is still treating us very aggressively. But the most terrible is self discrimination, when a person just give up.   

- Being optimistic is quite difficult. Do you feel healthy?

- I’m fine. I feel much better now compare with the period when I was drug addict. HIV-positive people get tired faster and they need to have more rest. There are some diet limitations for HIV-infected people: we cannot eat fat food, drink alcohol as with the liver diseases. The most important is to take pills strictly per hours. The basic scheme is 4-5 pills per day. And this will last forever all life long. ARV therapy suppresses virus replication, restores immune system and postpones AIDS.   

- What happens if you miss pills?

- It might be dangerous. The virus may mutate and if it happens, the new scheme for treatment is needed. There is lack of the medicines as well. It doesn’t mean that we cannot, let us say, leave Kiev for vacation. A lot of cities in Ukraine have AIDS centers where you can get treatment and care. Free of charge treatment will be provided to us till 2008 on expense of the Global Fund program. We hope that by that time our government can handle all HIV/AIDS problems.   

- Maybe someday the cure from this fatal disease will be invented. Are you aware of all scientific inventions highlighted in the press?  

- Why do you think it’s fatal? In the Western countries HIV is considered to be a chronic disease such as diabetes. If the cure will be invented - great, if not - we can handle it. Certainly we have to pay for everything in our life. But now I try to find something positive in all what happen to me.

- Sorry for such a personal question. How does it come with you private life?

- I have a girlfriend and she is HIV-negative. She also works in All-Ukrainian network of PLWH and she supports me a lot. Her parents know about my status. As to my parents, I doubt I could ever tell them. There is no need to do so. By the way, I have a lot of friends with the same situation. These couples are called discordant.   

- According to the science opposites are attracted to each other. Does your girlfriend love you so much that she is ready to sacrifice the chance of being a mother?

- We think of having a baby. In our case we are advised to go through sperm cleaning as this method helps to reduce the HIV transmit to the minimum. The nearest clinic where we can do this is in Poland. Besides, HIV-infected women have a chance to give birth to absolutely healthy children. Even without special therapy. Indeed in the womb the fetus is protected with placenta and the infection happens during the delivery process or breast feeding. Therefore these parturient are made dry cesarean and they feed their babies with milk substitutes. We do risk a lot indeed.

- It sounds as HIV is not a “plague” but the style of living.

- It is so!! Volunteer girl from Czech Republic at one of our parties said: “HIV-negative is also normal people!” Now it’s our corporate joke.   

* * *

Here is the victim of the terrible epidemic. This young fellow inspires people around and could beat by his optimism many of those in good health Vyacheslav is not unique. Russian sociologist Inna Vishemirskaya in her research work about HIV-infected people life notices that these people usually overcome HIV related problems and become activists. This is known as a modern survival strategy titled HIV-activism. All-Ukrainian network of PLWH was founded by seven HIV-positive activists. It proves to be easier to build up your own surrounding than waiting for the world to change. Now more than 300 people are working in the Network and representative offices are opened in 22 regions of Ukraine. Any political party could be jealous! They learn together, they visit trainings, arrange conferences and parties… It’s kind of a new social group.

"For me HIV is life style, this is everything for me. I can’t imagine what will happen if now somebody tell me I am HIV-negative. What would I do…"

"Any incurable disease not only kills, but gives opportunity to reveal different talents and capabilities that he even didn’t know about before he got sick. This precisely helps him both to survive and to live an interesting and useful life".

These are extracts from the interview of HIV-activists. I am sure that any of them even the most optimistic will give a lot to become HIV-negative again. When a pale thin girl came to Vyacheslav his face changed as if he saw his most sacrificed fear.

"Hi! How are you?" - "Thanks, today I feel much better".

TENDENCIES

IDUs BECAME MORE CAREFUL

Drug users still remain the GROUP of increased risk. However, according to the Kiev city AIDS center during the last year in Kiev the number of those infected in this group decreased from 75% to 64%. Apparently, the syringes exchange centers and harm reduction programs did the best.   

The number of those in Kiev contracting HIV/AIDS by heterosexual way is twice more than it used to be before– approximately 30%. (Use the condom!).

VERY often young pregnant women aging from 18 to 30 are having HIV (such test is required for all pregnant). Moreover for women HIV-positive status usually becomes a complete surprise. Then it becomes known that her husband is HIV-positive and that he used drugs. In other words - unexpected surprise from the past!

THEREFORE our youth treats amorous passion quite carefully. Before they have sex they demand their best part the quote of HIV status. Sometimes they may pass the tests together.

IN MAKEEVKA (Donetsk region) since 2001 the first and the only one in Ukraine specialized orphanage for HIV-infected kids is operating. 80 children from the entire region live there. Their age varies from infants to schoolboys. They were abandoned and were delivered by HIV-positive mothers.

FIGURES

76 875 of HIV-infected people are officially registered in Ukraine as of 01.03.2005.

9394 persons including 329 children have AIDS.

5 660 people including 156 children have already passed away.

448-491 thousands people these are the official data as of the number of HIV-infected in Ukraine.