Acquired immune deficiency syndrome (AIDS) is considered to be one of the deadliest illnesses in today’s world. It is estimated that 33.2 million people live with human immunodeficiency virus, HIV, which causes the disease. In Turkey, the number of HIV positive people is unclear as unawareness and prejudices cause them to be marginalized. It is to help people with HIV that the NGO Positive Living Association was established
YASEMİN SİM ESMEN
ISTANBUL – Turkish Daily News
Learning that one has an incurable disease is harsh enough. Add to it being marginalized, fired from one's job, humiliated and abandoned by one's family, and being turned down for treatment because of one's illness… People with human immunodeficiency virus, or HIV, try to avoid these attitudes at any cost, even if it means declining treatment and facing death, explain experts at one nongovernmental organization aiming to help HIV positive people.
The experts also believe the declared number of HIV positive people remains below the actual figures because of this approach toward the people with the illness. “The hardest part of our work is caused by discrimination in daily life or in health care,” said Nejat Ünlü, president of the NGO Positive Living Association. He explained that 63 percent of rights violations occurred in health facilities. He added, “These are the places you would expect the least violations because the people that work there are educated about the issue. This is a very serious situation; if even [health professionals] are not aware of HIV positive rights, what can be expected of the public in general?” Positive Living Association's main work field is the care, support, and treatment of HIV positive people. “What sets us apart [from other associations fighting HIV/AIDS in Turkey] is that, in our work, we look at the world through the point of view of HIV positive people,” said Ünlü. Ünlü said even though one could identify high-risk groups, such as abusers of intravenous drugs, convicts, homosexual men, and sex workers, these groups changed from one country to the other and that risky behavior was more determining in who would contact the virus. “It is more correct to identify a risky behavior than to label a group of people,” he said. Ünlü added that they have seen cases where a member of the high-risk group would act very carefully while someone not belonging to one of the risk groups would get involved in unsafe behavior and contact HIV.
Helping HIV positive people
The association has determined two main tasks for itself. The first is to defend the rights of HIV positive people in daily life and ensure their acceptance in society. The second mission of the association is to make the HIV positive person feel better through the Positive Living Support Center. “We give counseling in four main areas: Infections, diet, legal representation, and psychological support,” said Ünlü. He added that since the opening of the center roughly two years ago, 330 people have applied to them. Board member and project coordinator of the association, Arzu Kaykı, said most people contact them right after receiving the news that they have the virus. She added, “They come here thinking they will die. But here they learn they can continue on with their lives where they had left off,” she said. She said that HIV today has become a disease that can be kept under control with proper treatment but that care and discipline was necessary to achieve the desired results. “They feel better when they see that being HIV positive is not that horrible,” she said and added, “They see healthy-looking people that have been HIV positive for the past 10-15 years.” Kaykı believes the disease has many social impacts on one's life as well. “Their ties with life can get severed. It is very important that they regain their joie de vivre. Other difficulties can be overcome once that is accomplished,” she said. Ünlü believes the bad “record” of the illness combined with the representation of it in the Turkish media, as the “plague of the century,” is to blame for some of the prejudice against the disease. “Most of the people that come to the center blame themselves for their disease. They get psychological support to make it through this phase. It is a difficult period,” said Ünlü. He explained that people were afraid or ashamed to share the knowledge of their illness with other people, even their loved ones, for the fear of being labeled drug abuser, prostitute, or gay. He said, “Women cannot even share the knowledge of their disease with their mothers.”
Much more than the declared amount
Ünlü said that even though treatment is free of charge in Turkey for those covered by social security, many people suffered serious social consequences. He explained that there are about 3,000 known HIV positive people in Turkey whereas the correct number is estimated to be about eight to 50 times that number. Kaykı said there have been cases where people have faced death because they were too afraid of the consequences and could not receive treatment as a result. “In a way, they have committed suicide,” she said. Kaykı recounted how a woman diagnosed with HIV in the last month of her pregnancy contacted the association and Kaykı had gone to the hospital for the birth. She was appalled to see that the baby was being brought to the room where his parents waited in anticipation through the hospital's corridors in an incubator marked “Attention: HIV positive baby.” Kaykı cautioned the hospital staff. “The baby is around one years old now and turned out to be HIV negative. But he was labeled [incorrectly] at birth,” she said. She explained they have encountered six such cases where babies born to HIV positive parents were HIV negative. Of course, she added, care and special procedures had to be applied. Another difficulty that HIV positives face is the threat of being fired from their jobs, according to Kaykı and Ünlü. Government clerks working under Article 657 need to take their diagnoses to the institutions they work in order to receive their medications free of charge under the social security system. As the prices for these medications are quite high, the reasons are checked and the institution where the patient works learns about the patient's illness, explained Ünlü. “This is why a lot of government employees prefer not to take their medication even though it is free. They do not want their illness to be found out. Their conditions will progress to AIDS. We hope that this problem will be settled with the passage of the new social securities law,” he said. However Kaykı believes the new law will also bring new problems. “Routine tests, such as those determining virus count and the body's resistance, cannot be done in most health facilities,” said Kaykı. She explained that mostly these facilities would refer their patients to those that have them. She added, “But according to the new law, each facility should resolve the issue by itself. If they refer the patient to an outside facility, the patient will need to pay.” This would come as a financial blow to many patients as the costs of treatment and tests are quite high. The tests, which are required once in three to four months cost around $ 500-600 while the medications cost between $ 600-1,500 per month depending on the medication cocktail the patient requires.
Insufficient informationÜnlü believes that fear of the illness would prevent those that are infected with the virus from seeking treatment, leading to the spread of the disease. “There is a rise [in the number of people infected] in Turkey. If we do not take preventive measures today, it would be nearly impossible to control it once the official numbers reach tens of thousands of people,” he said. He added that tracking the disease was hard in Turkey as there was lack of sufficient data. “We are walking in the dark,” said Ünlü. He explained that 12 NGOs have come together to form the HIV/AIDS NGOs Platform. “Our main target in forming this platform was to form a common strategy. The NGOs should come together and receive the collaboration of the state to form a successful strategy,” he said. He added that the model they had developed in the association in Istanbul has been successful so far. “But no one knows what is going on in [southeastern city of] Batman or even [the southern city of] Antalya. This model should be duplicated in other cities,” said Ünlü. Kaykı advises taking things one step at a time and not to panic once one is diagnosed with HIV. “We would also advise them to contact us. We help them find out how they can continue with their lives from this point on,” she said. She added that they also welcomed any volunteers. The Positive Living Association can be reached at: +212 288-3883 and their Web site: email@example.com. More information can be obtained at: www.pozitifyasam.org