December 1 - From AIDS Day to World AIDS Day

AIDS HIV
Activist lights a candle during International AIDS Candlelight Memorial in Belgrade, Serbia / Photo: EPA-EFE / ANDREJ CUKIC

The HIV virus then and today

Science today has found that the virus that causes Acquired Immune Deficiency Syndrome (AIDS) originated much earlier than originally thought. Although HIV was officially registered in 1981, high-tech genetic scientists have confirmed that the virus was first transmitted from a human chimpanzee to sub-Saharan Africa in the early 20s. It reached a large scale in America in the early 80's when severe forms of immunodeficiency were the cause of death of many healthy men with homosexual orientation. However, sporadic cases have occurred in patients with hemophilia, and they were completely surprised when the virus was detected in newborns. Today, it has been proven with certainty that HIV is transmitted in only three ways, through unprotected sexual intercourse, by blood - through the use of non-sterile utensils when injecting drugs and from mother to newborn during pregnancy, childbirth or breastfeeding.

From the beginning, AIDS activists had seemingly radical actions to show the world that they had to do more to find a cure for the disease. In the United States, activists took to the streets and pretended to be dead in order to show the government and scientists in pharmaceutical companies that drugs were needed immediately and urgently. Thanks to that activism, the first antiretroviral drugs became available in the late 80s and began to extend the life of many patients.

Freddie Mercury - 30 years since his death

Freddie Mercury
Freddie Mercury / Profimedia

Acquired Immune Deficiency Syndrome has emerged in the age of rock and roll, and the name of Freddie Mercury, the rock star of the band Queen, is inevitable. This year marks 30 years since his death and the announcement that he is HIV positive. For many, the best male vocalist of all time will be remembered as a singer, songwriter and instrumentalist, but also a man who considered his privacy extremely important. Exactly because of the silence about his HIV-positive status and the opportunity to do much more in response to AIDS, this year we loudly dedicate the December 1 campaign to him, by showing a film about his prematurely extinct life and unveiling a mural at the Cinematheque of Macedonia.

The beginnings of HIV in Macedonia

More than 1987 years have passed since the first positive case in Macedonia in 1989 and the first person with AIDS in 30. That time full of fear, shame and uncertainty from the course of the disease we are slowly leaving behind and today we are no longer talking about the fight against AIDS (which implies the fight against people who have AIDS) but we celebrate World Day of all living with HIV or AIDS or have died from this disease.

In the early 90s of the last century we registered the first infected with HIV and the first to die of AIDS. People with severe forms of opportunistic infections were brought to the Clinic for Infectious Diseases and Febrile Conditions in Skopje, who died after several months of treatment. From the initial diagnosis of HIV to the final stage of illness and death, it has often been months. The medical staff was worried, the families were hopeless… The sadness and the fear of not being found out in the environment determined the fate of the HIV-positive people, but also their loved ones who struggled with the stigma and prejudices about the disease. The first activists and volunteers of the organization HERA appear as a bright spot, who will start offering support and concrete help to the patients themselves and their families. These activists were also the first to fight discrimination and gross violations of patients' rights.

Introduction of antiretroviral therapy

Although highly active antiretroviral therapy has been used in the world since 1996, in Macedonia the lack of this effective therapy was the main reason for the large number of deaths at that time. However, with the entry of the Global Fund to Fight AIDS, Tuberculosis and Malaria in Macedonia in 2005, the first treatment for HIV began, providing a new hope - but also a completely different perspective - for people diagnosed with HIV. -positive. HIV drugs work by preventing the virus from multiplying or making new copies of the virus. This brings the amount of virus in the blood to immeasurably low values, ie. to the so-called undetectable level. In that case, the number of immune cells has the opportunity to renew and the human immunity to recover - usually to levels as before the acquisition of HIV infection. With that, the person achieves immunity as well as a person who does not have HIV.

Antiretroviral (ARV) / EPA / NIC BOTHMA

The power of antiretroviral therapy

The use of antiretroviral therapy in people with HIV also acts as prevention. This means that the virus can not be transmitted from people who have HIV if they regularly receive therapy and maintain the so-called. undetectable level of virus. Recent clinical studies in the world show that immeasurable values, ie. undetectable level of the virus in the blood means that the virus is not transmissible. And this should be one of the hallmarks of HIV infection in the 21st century: people who have HIV but receive regular therapy can have sex without a condom without the risk of transmitting the virus to their partners. Also, women with HIV who are planning a pregnancy can have HIV-negative children without passing it on to their babies during pregnancy or childbirth.

HIV in Macedonia in 2021

The availability of free therapy, modern therapy options and psychosocial support received by people living with HIV in Macedonia makes this disease today just another chronic diagnosis that can be lived with a long and quality life. Today, if HIV status is detected in a timely manner, people with HIV do not die and do not develop serious symptoms of the disease. Today, HIV-positive people plan and form families; Thus, in the last few years, as many as six babies with HIV negative status have been born in families where one or both parents are HIV-positive. In no case was an HIV-positive baby born.

Stigma and discrimination

The biggest social problem, however, remains the labeling and unequal treatment of HIV-positive people at different levels of society. Fear of losing friends and loved ones, rejection from family or work environment, not providing health or social services are just part of the daily life of people living with HIV. Lack of information and prejudice about the disease are still a feature of a time that we need to leave behind.

Indian AIDS Sex Worker Holds "I Can't Make You Sick" banner at World AIDS Awareness Day / Photo: EPA-EFE / PIYAL ADHIKARY

The role of the civil society sector

The Association TOGETHER STRONGER as an independent organization of people living with HIV was registered in 2013 in order to provide support to people living with HIV and their families. We provide peer support services, including assistance in raising antiretroviral therapy, psychosocial support and assistance in food and hygiene products for people with disadvantaged social status, as well as legal assistance in case of violation of the rights of people living with HIV in Macedonia. As part of our activities, we advocate for people to have constant access to quality and modern therapy, we participate in the creation of public policies related to HIV. Traditionally, every year on December 1, we organize a campaign to raise public awareness about HIV, which raises charitable funds to help people living with HIV who are living in a difficult financial situation.

1 December 2021

"Viruses do not discriminate, people - yes!" Is this year's main message we want to send with this campaign. As part of the activities to mark the World AIDS Day, we have planned a flash mob performance that will be held at 6 locations throughout Skopje where at a certain time, without prior notice, dancers will appear on stage with specially designed choreography, costume design and music. will demonstrate the message "Viruses do not discriminate, people do!". With the unveiling of the mural by Freddie Macyuri at the Cinematheque of Macedonia, we want to discover the "Silent Truth" as a cultural monument in our society. Part of the program is a film that in its plot re-discusses the topic of HIV. We will end the evening with a cocktail party and promotion of the calendar through which funds will be provided for socially disadvantaged people living with HIV.

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