Helping her Family, a Woman Fights HIV/AIDS Stigma
“People don't want to talk about death from HIV and sex, because it brings two of the greatest taboos together,” says Luiza. This Albanian woman should know -- she has lost her husband to AIDS, and is HIV positive herself, along with three of her four children. Yet she lives in secrecy because of the stigma of AIDS in
In March 2003, Luiza’s husband passed away. He never knew he was dying of AIDS because the doctors never told him – or his wife. But people suspected. “We had a good life and a lot of good friends, but when my husband died none of our friends came to his funeral, because they knew he died from HIV,” she says.
A friend suggested that Luiza (her name has been changed to protect her privacy) and her four children should be tested for HIV. All of them turned out to be HIV positive – except her eldest child, who was born before Luiza’s husband had the blood transfusion that infected him.
Luiza and her children were ostracized by everyone in the family except one sister, who lives abroad. “Living with HIV in
A search for treatment
The health of Luiza’s 2-year-old twins started to deteriorate in March 2003. She began to read everything she could find about HIV/AIDS treatment and to check pharmacies for the anti-retroviral drugs that treat the symptoms of HIV/AIDS, but they were not available in
The drugs were administered in the hospital. “I remember the hesitant looks of the nurses, it was like we were death for them,” she recalls. “I remember even the cleaning lady refused to clean the room where my children were hospitalized.”
Finally, Luiza wrote to the Minister of Health to ask for help. He pledged to ensure social assistance to help her acquire the drugs and to accelerate the procurement of antiretroviral drugs for all AIDS patients in
UNICEF helps out
In March 2004 the Government allocated $150,000 to purchase anti-retroviral drugs and signed an agreement to purchase them through UNICEF. Four months later, Luiza and her children began treatment.
“In these 12 years, Albania has gone through a new experience in treating people living with HIV/AIDS,” says Dr Arjan Harxhi, a clinicial professor of medicine at Tirana University and an infectious diseases specialist at Tirana Hospital. “I must say that today the situation has improved with regard to attitudes and behaviours among health personnel. Fighting the fear and stigma was the biggest challenge. The doctors and nurses were more careful than necessary when they worked with the HIV patients. They put on gloves even when it was not necessary. We have worked with these health personnel to help them fight the fear of getting infected by explaining the ways of HIV transmission and how to administer the treatment properly.”
In 2005, UNICEF supported the production of a manual for medical students, Ethics and human rights, to teach them to be respectful in treating patients, especially HIV/AIDS patients. “I hope that this will bring a new culture of handling HIV/AIDS in Albania from the health point of view,” adds Dr Harxhi.
“The HIV treatment is a multidisciplinary intervention,” says Dr Harxhi. “It includes the home care of the patient, the psychosocial support, nursing care and the end-of-life care. These interventions are not institutionalized in the county yet, and as a result, there is still room for improvement in the quality of services.”
Things are also better for Luiza. “Since July 2004, my sons are getting the drugs for free,” she says. “I feel much better now because there is no more stress about finding medicine. It’s a kind of luxury for me, being treated without paying anything. The health personnel are friendlier, and they treat us like other patients.”
But she faces more challenges. Her 10-year-old son keeps asking her why he must take so many medicines every day. “I have not found the courage to tell him the truth yet,” Luiza says. “There are moments when I want to disappear, but the desire to help my children keeps me strong and alive.”
Fear about the results of testing, lack of access of care and treatment, the stigma of being HIV positive are the main reasons that people do not get tested in Albania.
“To encourage testing, the voluntary counseling and testing infrastructure needs to be in place,” says Dr Harxhi. “We can’t encourage testing without counseling, and we do have to respect the decision of the person who may or may not want to get the test. The counseling benefits are huge. It brings changes of behaviour, promotes the use of condoms and encourages people to show more respect for their partners.”
UNICEF is supporting the National AIDS Programme to set up five pilot voluntary testing and counseling centres in Tirana. These centres will also serve as the first step of a national surveillance system to track the extent of Albania’s epidemic.
Fighting ignorance and stigma
Society's ignorance has forced people who are HIV-positive to form separate social groups. People living with HIV suffer not just from the disease but also from discrimination, stigma and isolation. While it is important to inform the general public about the risk, more needs to be done to empower people who live with HIV/AIDS and their families to take the lead in such campaigns.
“In Albania people speak up about HIV/AIDS only on December 1, World AIDS Day, and this is wrong,” says Luiza. “A massive awareness campaign is needed. There are so many things to tell young people, the entire population, and especially women, who face the most discrimination. We need to send messages about prevention and encourage people to get tested.”
With support from the National AIDS Programme, Luiza has talked with the Ministry of Health about creating a centre to help people living with HIV and to break down the stigma. The centre would aim at providing psychosocial support for those who are infected and encourage them to speak out. “I hope I can help educate others about HIV, and I hope that my experience will help create change,” says Luiza. She has a hopeful smile on her face.