When HIV first became apparent as an epidemic 30 years ago, the life span of people diagnosed with HIV was not good. But thanks to a massive awareness campaign launched by various government and non-government agencies, the life expectancy rate of the victims has improved significantly and the rate of infection has also drastically come down. Several studies suggest that HIV sufferers now can lead a normal life like others if they continue to maintain discipline. However, it is not just the awareness campaigns that have made the turn around. There are many survivors who with their disciplined lifestyles made others believe that AIDS is not a disease but a condition which can be overcome. . Ahead of World AIDS Day December 1, a day observed to show solidarity with the millions of people living with HIV worldwide, Sunday POST brings the tales of some such fierce fighters who have managed to beat HIV virus with their determination.
‘My daughter and I were
abandoned by the in-laws’
Most people with HIV infection prefer to hide their identities in fear of discrimination and lack of acceptance. But Prabhasini Pradhan is an aberration. Since has never tried to hide herself from the day she was diagnosed HIV +ve. Moreover, the infection has given her a purpose in life, says Prabhasini. It helps build her inner strength which she uses to help many like others. Needless to say Prabhasini, after contracting the virus from her husband, has now turned a beacon of hope for other victims. Now widowed, she doesn’t hesitate to share her success story to inspire others.
She recounts “We were a happily married couple. But my husband, who was working at a factory in Mumbai, tested HIV positive in 2003 leaving us in shock, fear and gloom. We got married in 2000 and were blessed with a daughter the next year. We had a lot of dreams for the future and never thought that they would be shattered so soon. However, the worst was yet to come. I too was tested HIV +ve in a precautionary investigation. My husband died 15 days after being diagnosed with HIV. Following my husband’s death rituals, his family abandoned me and my daughter.”
Prabhasini had to face a problem about which she was completely ignorant. At that time, there was a perception that people who are unfaithful to their partners suffer from AIDS and once contracted death is inevitable.
But Prabhasini decided not to give in. She went back to her parents and started tailoring and giving tuitions to students to make ends meet and ensure a decent childhood for her daughter.
“Most of those early days of my infection were spent in regular blood tests. It was really tough for me. In the meanwhile, I met a counselor at an Integrated Counseling and Testing Centre (ICTC) and she helped me deal with the trauma I was going through. She changed my notion towards AIDS. I realised that there are hundreds of people living with this virus. I took part in a meeting organised by Orissa State AIDS Control Society (OSACS) where I met Amarendra Behera and Ajay Samal, who inspired me to lead a graceful life like many other people living with HIV virus. It was then I joined a forum Kalinga Network for People Living with HIV/AIDS (KNP+) founded by Ajay Patra in 2006,” recalls Prabhasini.
Soon, she became a prominent community activist—working to increase access to government’s social benefits for people living with HIV and for most-at-risk populations, including transgender people, in Odisha. Now, the forum is being run and led by Prabhasini, its president.
“HIV people lead shameful and stressful lives and do not raise their voice for their rights. Here comes the role of KNP+ to boost their confidence and counsel them for a better tomorrow. Thanks to KNP+, people living with HIV have found the strength not only to rebuild their own future, but also to help those around them. Since 2006, the network has been helping people living with HIV in getting their day-to-day needs. KNP+ was formed to make people afflicted with HIV AIDS aware about the antiretroviral therapy centers,”says Prabhasini.
As many as 18,000 people living with HIV have been benefited by the forum. KNP+ reached out to people who complained of non-cooperation of doctors, nurses and health workers while dealing with positive patients.
Her forum, with centers across Odisha, is leaving no stone unturned to make a difference to the lives of HIV positive people and their families.
‘My family wanted me to
die as soon as possible’
Jiban Krushna Mohanty,56, a resident of Nayapalli of Bhubaneswar is yet another survivor who challenged HIV virus and is now leading a normal life. After testing positive, he did not lose hope and joined KNP+ where he got the motivation to fight the virus. Today, he is a well-known activist and social worker who takes lead in implementing HIV response programmes in Khurda district.
Jiban was diagnosed with HIV in 2007. “I was an alcoholic in my prime and subsequently fell prey to drugs. In no time I developed several health disorders due to repeated injection drugs. However, I realised my mistake before it was too late and withdrew myself. But I experienced hallucinations after suddenly stopping taking them. I had a fever for many days. As the temperature did not come down, I had undergone many tests including HIV test as per the doctor’s advice. “It was heartbreaking to learn that I was tested positive for both TB and HIV. The latter entered my body through syringes which were used by many people. My life had turned upside down before I could realise. My parents and siblings started misbehaving with me. Apart from keeping distance from me, all they wanted me to die as soon as possible. They asked me to live alone in a room with my belongings. However, I was determined to fight back.”
As HIV treatment was not available in Bhubaneswar at that time, Jiban used to travel to Berhampur for his treatment. Soon, an antiretroviral therapy (ART) centre was opened at SCB Medical College and Hospital where he registered his name.
“My CD4 count was between 200 and 250 when tested at the ART centre in Cuttack. However, I did not panic and knocked at the door of Narcotics Anonymous to get rid of my drinking habit. Fortunately, I found support with KNP+. After taking ART medicines regularly, my CD4 count has now increased to 800. I would like to thank Prabhasini Madam for counseling me properly and helping me return to normal life.”
Jivan currently works as an outreach worker at KNP+ and lends helping hand to people living with AIDS.
‘Docs, nurses refused to attend to me’
Meet Nimapara-based transgender Sonia who was diagnosed with HIV AIDS seven years back. After being diagnosed with HIV, a transwoman like her faced double discrimination – first because of her gender identity and then for her HIV status. She faced discrimination while undergoing treatment for HIV at a government hospital. But she is lucky to have supportive parents and siblings who had never asked her to leave the house when they got to know that he is a transgender. It also made no difference to them when she became HIV positive.
Recalling those days, Sonia says, “After having my Class X board examinations, I was down with fever for many days. My parents took me to SCB Medical College and Hospital where I was diagnosed with last stage Tuberculosis. Doctors made it clear that I had a few days left with me. However, I was not devastated when I learnt about the reality. To make matters worse, I was tested HIV +ve after a few days. My parents broke down to find out my condition. As I had earlier worked at the Pehchan office I knew how to deal with such condition.”
She continues: “In the meantime I have found new strength in the form of KNP+. But negligence on the part of doctors at Capital hospital hurt me very much. I got admitted to Capital Hospital once after meeting with a mishap. However, doctors and nurses refused to attend to me after they came to know that I was HIV +ve. It was outreach workers of KNP+ and ASHA workers who came to my rescue following which the doctor administered injection. KNP+ helped me to remain physically, mentally and emotionally healthy.”
“I tell them I am like you. I am HIV+ve and I am taking medicines too. You are not alone,” says Sonia to those who take extreme steps of killing themselves after knowing that they are HIV positive.
Rashmi Rekha Das,OP