By Shanika Sriyananda

In Sri Lanka, over 1,732 men and women are living with a certified ‘death warrant’. There is no one to revert this warrant as there is no medical answer still to cure the Human Immunodeficiency Virus (HIV) that growing in their body systems. 

Social stigma and people’s attitude towards HIV positives have forced these men and women to be in hiding. With over 3,600 estimated HIV positives, health authorities are requesting over 2,091 HIV positives and sexually active, whose whereabouts are unknown, to seek treatment to keep the spreading of the virus at bay.

For those who are hiding and ignore treatment, the life is a deadly struggle in which they fight physically, mentally, socially and economically. 

Since 1981 with the first noted HIV case, the virus reached to a global epidemic sickening over 35 million people worldwide. 

‘HIV/AIDS is deadly and no cure’, the slogan carried by the health authorities have made more HIV positives or those who speculate them having the virus to live secretly as they presumed that they will soon die of the infection and why just expose themselves if they die soon?

Until recently HIV remained as a death warrant but after 30 years, the medical sciences have proved, though no miracle drug is yet found to cure HIV, the lives of HIV positives can be prolonged to help them to lead normal lives.  

Today, HIV is no longer a death sentence. Thanks to the continuous scientific experiments, which have proved that infection can be controlled through proper use of Antiretroviral (ARV) drugs it has become yet another chronic disease. If the virus is detected at early stages, an HIV positive person can lead a normal healthy life span.

Palitha Wijebandara and Princy Mangalika are among hundreds of HIV positives in Sri Lanka who are leading normal lives as they are taking ARVs properly.

Palitha, who was 23 years old when he was working abroad, was ignorant about how HIV spreads among people. It was the scariest moment in his life when his Manager announced to him that he was having the infection after the annual medical check-up. 

He said that nothing came to his mind other than the slogan ‘HIV/AIDS maranthikai’ (HIV/AIDS deadly), which aired on radio and TV on HIV/AIDS public awareness advertisements in Sri Lanka.

“I was detected as an HIV positive when I was working abroad. I felt nothing other than the feeling that I was going to die soon,” Palitha said.

With no clue about his next course of action, the youth was kept locked with a security guard while his friends who got the news about his infection before him burnt all his clothing.

“In 2005, I landed in Sri Lanka empty handed after working three years in Saudi Arabia. I had heaps of dreams including to give a better life to my parents and sisters. I wanted to work hard and earn but all my dreams were shattered with the infection,” Palitha said.

Hailing from a very poor family, Palitha in his 30s now claimed that he once had unprotected sex when he was abroad and was not aware about HIV/AIDS. 

‘Re-born’ with immense support medically and mentally by medical team

Fighting a losing battle and carrying a ‘deadly disease’ Palitha was re-born at the Kurunegala Hospital with immense support – medically and mentally – given by his medical team.

“They directed me to become a positive thinker during their counselling and encouraged me to get my ARVs regularly, which is very important for an HIV positive to be healthy. I have no words to thank my doctors and the medical staff who always encouraged me to stand on my own feet again,” he said.

Being the coordinator of a local NGO called Positive Hope Alliance,  Palitha now helps the Alliance to hold awareness campaigns and workshops on HIV/AIDS in Colombo and Gampaha, the two districts where the highest number of HIV positives are recorded in the country.

Palitha, at first thought he would die soon of the infection but his medical team explained to him that he can prolong life if he is under proper medical surveillance and continuous ARV drug treatment. 

“When I returned to the country my CD 4 cell count was reduced to below 500 but the doctors didn’t start ARV until 2011, in which the CD4 count was drastically reduced to 350,” Palitha, who takes two pills in the night and one tablet in the morning daily, said.

His younger sister’s death due to cancer was a big blow to Palitha as she was the only trustworthy person to whom he revealed the secret that he carries a ‘deadly virus’. “She never betrayed me. She was my inspiration to have regular drug treatment. Every day she encouraged me to take the tablets on time to delay my death. She thought I would die soon but cancer took her life and HIV has prolonged my life,” he sighed.

Princy Mangalika’s smile is infectious just as the disease she is suffering. The sharp eyes show her courage and commitment to walk in that difficult path to support and voice a group of people whom are tagged as ‘strictly untouchables’ just like her. 

Innocent village housewife

The innocent village housewife with two teenage girls contracted the HIV through her husband who worked abroad to build them a house and a comfortable life.

Living a content life and managing his hard earned money to build a house and for the girls’ education, she had no problem with her husband who worked as a chef in a hotel in Germany and later moved to a hotel in Maldives. He earned and came home to have a happy life with his family.

Unfortunately, their lives began to collapse with him frequently falling ill and it was finally detected that he was HIV positive. Princy, who was unaware of what HIV/ AIDS was, thought it is a normal ailment like pressure or diabetes.

“However, I suspected a change in my husband as he was avoiding looking at me. He was restless. He couldn’t stand in front of me. He always lived with guilt. Finally the doctors revealed that he was infected with HIV. The news was leaked by a minor staffer of the hospital who lived in the village. The entire village came against our family and set fire to our house. We felt helpless and I wanted to die. But, again I thought that I can’t leave my two daughters. I decided to live but my husband couldn’t take it. One fine day he committed suicide,” she got emotional while recalling her harrowing tale that gave her strength to stand tall among others.

Today, she says that he shouldn’t have taken his life leaving her to suffer nightmarish experiences as a single mother. “He could have stayed with me to face the reality. He could support me and my children to survive instead of running away,” she said.

Without any support from any one including his family members and villagers looking at them as a family at death row and a curse, Princy and her two daughters fled secretly to her parents’ house.

After a few months of her husband’s death, she and her two children were tested for HIV. Her life became a nightmare when she too was found to be HIV positive in 2001. But her children were spared as they were tested negative.

Awareness and knowledge is power

Helplessly, she approached the AIDS Prevention Program in Colombo for help. The staff there explained the reality of her life and encouraged her to think positively to challenge all odds to rebuild her life.

“I was determined to live and face challenges as an HIV positive. I took all medicine properly and it kept me healthy and gave strength to fight the virus,” Princy, who formed the Positive Women Network (PWN) in 2009 to look after HIV/AIDS victims, said.

Over 350 men, women and children whom were rejected by their own families and society have found refuge in her centre, where they are being fed, protected and encouraged to take medicine properly.

“When one is infected with HIV, the ARV therapy is a must to prolong life. The PWN always encourages our members to get medicine on time daily. We take them to hospitals to get their monthly allocation of ARVs,” Princy said.

Fully devoted to provide love, care and awareness, Princy arranges regular awareness campaigns to educate her members about their responsibilities to the society and also their rights as patients.

She said that unlike early days, HIV positives have long life if they properly use ARVs. “I am living for the last 14 years with HIV. I feel healthy and work a lot because I never miss my daily dosage of ARVs. I tell my members and those who are newly infected with HIV, take me as an example and continue with proper medication coupled with positive thinking to live longer,” she emphasised.  

“Awareness and knowledge is power – if you know what you are doing with HIV, you can lead a full life,” she smiled.

ARVs keep HIV at bay

In the history of pharmacology, the combining anti-retroviral drug has been a major achievement in fighting the HIV. The major factor to prolong the lives of HIV positives are the ARVs. The ARV therapy is simple as it has only a few tablets to swallow daily for the rest of a person’s life and that will help to reduce the HIV in the body.

ARVs will not give a complete cure for HIV positives but it will keep the HIV at bay to stop people getting sick for many years. One pill contains several anti-HIV drugs and it is called combination drugs therapy.

“In Sri Lanka, the ARVs, which are worth Rs. 3,000 for a month, are given free-of-charge to HIV positives based on their immunity level (if the CD4 count is 500 or below),” UNAIDS Country Manager for Sri Lanka Dr. Dayanath Ranatunga said.

He said ARVs are more effective if the HIV infection is diagnosed early but when started at later stages, the treatment will help them to live longer than expected.

Dr. Ranatunga told the Daily FT that they encouraged the HIV positives to get in touch with the clinics in the state-run hospitals to get the ARVs free to get the health benefits.

“We want to get people detected with the virus early so that they can start the ARV therapy soon to get better results,” he said adding that the HIV has now become a chronic manageable disease like hypertension, diabetes and arthritis.

However, Dr. Ranatunga claimed that the hard-hitting advertisement which said HIV/AIDS is deadly, still remains as a hindrance to get the HIV positives to clinics as they have the wrong view that they are in the ‘death row’ and there is no hope for living.

“But it is wrong. Though it is incurable yet, HIV positives can live longer if they take the ARVs properly,” he noted adding that out of the estimated 3,600 HIV/AIDS people in Sri Lanka, only 1,732 have been diagnosed and the whereabouts of the balance 1,500 are still unknown.

“This situation poses a grave threat. The other serious issue is out of 1,732 people diagnosed with HIV, only 825 HIV positives are coming to clinics for treatment but there are no records on the whereabouts of the rest of the patients. We are not aware whether they are taking treatment or not,” he explained.

However, fear, stigma and ignorance still prevent the HIV positives from coming forward for testing and treatment. Despite the enormous public awareness campaigns and workshops, there is still a lot of ignorance around.

“Social stigma around HIV people has reduced significantly but needs more awareness to bring those who are hiding and avoiding reaching out for hospitals,” Dr. Ranatunga said.

With the National STD/HIV Control Program detecting 59 new HIV patients during the first quarter of 2015 and diagnosing only 50% of all HIV/AIDS positives in Sri Lanka, the country is facing a risk of spreading the disease.

“Although Sri Lanka still remains a low prevalence country, the number of people infected with HIV is on the increase. The main risk is still the infected people don’t reach for testing,” he claimed.

Dr. Ranatunga said that those who are still in hiding are sexually active and need to get into testing and treatment to prevent further spreading.

Meanwhile, Sri Lanka holds a record this year as the only country in the Asia Pacific region where not a single case of mother-to-child transmission has been reported since the first quarter of 2014.

There were eight pregnant mothers infected with HIV but their children were born free of the disease due to early detection on the virus and continuous ARV treatment to control the virus.

Dr. Ranatunga requested all the pregnant mothers to request a blood test during their pregnancy.

“The Ministry of Health has a pilot project, assisted by the UNAIDS, in five state hospitals – Colombo, Gampaha, Kalutara, Galle and Kandy – where blood testing for HIV is compulsory. Under this project over 48% of the pregnant mothers have been tested for HIV and we hope to increase the coverage to reduce mother-to-child transmission by 100% by the end of 2015,” he said requesting all pregnant mothers to request for the simple blood test which is done free-of- charge.

He said only 2% of the pregnant mothers go to private hospitals and requests them to ask their doctors to do the test as it is an opportunity to give birth to HIV-free babies.