At 38, Veni looks back at a life completely different from anything she could have expected growing up in a remote village in Perambalur district. “HIV has been a rebirth of the ‘inner me’, says the plucky woman.
Today, Veni refuses to let her HIV diagnosis stand in the way of living her life. She is one of a steadily growing group of people in Tamil Nadu who have, with medical help and community support, found the strength to build resilience and even help others living with the infection.
Veni’s confidence and determination has come slowly over time. “Back in 2000, when I tested positive, shock, fear and gloom flooded me in quick succession,” she narrates.
Stories of resilience
Just 19 years old and newly married then, Veni felt her hopes and dreams shatter with the diagnosis. “I had to cope with this gigantic problem about which I knew nothing. Those were the days when AIDS was considered a disease of immoral people, for which there was no cure.”
The diagnosis came as a terrible, fearful shock to Veni’s uneducated parents. But her husband's family knew that he was carrying this deadly virus and was at the end of his days. “Within six months he died and I was already pregnant. Subsequently I gave birth to a male child who also tested positive,” she says.
But Veni had little time to dwell on her misfortune. Most of those early days of her infection were spent in repeated tests for her and her baby boy. She was referred to the Namakkal General Hospital—back then, the AIDS department was located a long distance away from the main blocks of the hospital. Anti-retro viral therapy (ART) had not yet been introduced, and the prognosis offered little more than a few months to two years of life for people diagnosed HIV positive. Tests were repeated several times, and results would take many days and even weeks to arrive.
"I saw men and women with full-blown infections suffering from a host of illness. Many thinned down drastically, co-infected with tuberculosis. They were dying off one after another. When anyone stopped coming to the clinic, it was assumed that the person was dead, or lured off by quacks or alternate medical practitioners holding out promises of a magic cure for AIDS. They claimed that it was the world's oldest disease, referred to extensively in indigenous medical systems,” narrates Veni, recalling the grim atmosphere of those years.
Fortunately, Veni did not develop any secondary infections, and did not need to be hospitalised.
One of the most important pillars for her in those years, was the community of HIV/AIDS support groups that proved to be a wellspring of necessary information, solidarity and psychological support. “As I lived on, I turned to HIV/AIDS support groups, where I could share my doubts and fears and get emotional support,” says Veni.
In turn, Veni too became determined to provide the same support to others around her. With only a high school education, she became an HIV outreach volunteer. Her work involved imparting awareness to the public, maintaining a network of positive women in her area, and motivating them to get regular tests and avail treatment.
In 2011, Veni’s infection began to grow, and she had to begin ART herself. Her son was also put on ART. Visits to the ART centre were a life changing experience for Veni. “Motivated by the counsellors at the Care and Support Centre (CSC), I prepared for the Tamil Nadu Public Service Commission exams and got selected in the Survey Department. Now I am a Deputy Surveyor and my income is good enough to support my parents and educate my son (18 years old now), who is doing a polytechnic course.”
Just as life-affirming in his outlook is Madheswaran, a 48-year-old Superintendent in a state government office in Salem district. His HIV diagnosis came in 2006, as a rude shock amid a settled life with two grown up children.
But this was not the same environment in which Veni received her diagnosis. “In 2006, ART had been available in Tamil Nadu for two years, and the number of deaths was coming down. I was told that I had many healthy years ahead and that I can live a near-normal life if I adhered to a drug regimen, healthy diet and exercise. I was put on ART the same year,” explains Madheswaran.
“As death was not on the table, I planned for life. I turned fitness into a passion, and not just a necessary part of the treatment,” he says. Turning into a fitness freak and eventually a fitness guru, Madheswaran now runs a modern gym in Attur, imparting physical fitness training.
Managing infection, maintaining hope
Veni is clear that keeping up her spirits is an important part of continuing her fight against her HIV infection. “My son and I live with the virus without thinking about it. Less worry means less disease,” she asserts.
“We eat well, and maintain a healthy diet to cope with the drugs,” she adds, clarifying that she doesn’t dwell on the side effects of her treatment. Medicines have become a part of everyone's life these days, she reasons. "A person with diabetes can't eat what he or she likes but I have no such restrictions. Isn't that a good deal?" she asks in a lighter tone.
Veni believes that uncertainty about death is an undeniable part of life. “People die at any age from many causes. But even my doctors can't predict my life span. Isn’t this the case with every normal person? Only God can say how many tomorrows I have,” she asserts.
On ART for ten years now, Madheswaran too wears a cheery disposition and does not complain about anything, especially regarding his treatment. “Keeping the mind and body fit ensures good health. I follow a healthy diet and strictly adhere to it,” he says.
Madheswaran is happiest about the fact that his wife and children were not infected, and his two children are now married and living their lives. As for his own life, he looks only to the future, and never spends time brooding over the past. “How I got infected is a forgotten story in my life. How I keep from spreading it and how I am going to make the most of the healthy days ahead is important."
Growing support
Undoubtedly, the introduction of ART has been the single most important development in India’s fight against HIV and AIDS. After ART was introduced in India in 2004, deaths caused by AIDS declined nearly 55%, whereas the number of people newly infected by HIV had come down by 66% since 2000. In 2007, India recorded 1,48,309 deaths due to AIDS-related illnesses, while in 2015, the numbers had dropped down to 67,600, An estimated 62,000 people died from AIDS-related illnesses in 2016, the last year for which statistics of deaths are available. India has set an ambitious target of bringing new HIV infections down to zero by 2030.
But almost as important as the medical treatment provided by ART is the growth of support networks in the country. Many on the front lines of this fight are people themselves living with HIV, who have found the strength not only to rebuild their own lives, but also to help those around them.
One such pillar of support is trans person Noori alias Noor Mohamad, the third person in the country to be identified as HIV positive back in 1987. Noori, who is probably the oldest HIV survivor in the country, believes that treatment provides half the support needed for survivors to continue with their lives, while love and care fulfill the other half. True to this conviction, she runs a home in Chennai, under her SIP Trust, for children with HIV and those left orphaned by AIDS. “Being happy and worry free is a major contributor, besides a healthy diet, for a lighter viral load and healthy T-Cell counts,” she asserts. Her powerful presentation at an AIDS conference in South Africa, attended by former Union Health Minister Dr Anbumani Ramdoss, was a key moment that paved the way for free ART drug distribution in India.
Noori
Such networks of support give people like 28-year-old Latha the crucial help they need to successfully live with HIV. Born with HIV, Latha, married an HIV-negative man and gave birth to a HIV-negative child. Living with her mother in Perambalur district, Latha earns a living by selling coconuts and bananas to devotees near a well-known temple.
Latha says that it is the local positive women’s network that has helped her continue with her life. Sharing her doubts and fears with her peers, learning about drug intake, getting advice on coping with side effects and suggestions for healthy diet, dealing with conception and keeping her husband and child infection free are some of the many areas of support she has received from the network.
Support networks also play an important role in the case of second-generation survivors. Thanks to them, many children born with HIV are now finding ways to live near-normal lives. In Salem, for instance, counsellors who work with people with HIV have secured admission in colleges and schools for 40 children and youths this year, of whom 30 have already began their courses.
“Last year we helped admit over 50 children,” says Nallathambi, a counsellor at one of the ART centres in the district. These adolescents and children have either been orphaned and live in hostels, or live with a single parent (with the other parent succumbing to AIDS). ART in juvenile doses has ensured that they have had the chance to grow into adulthood just as any uninfected child does.
Still a struggle
While the number of inspiring survival stories is steadily growing, there are still a number of challenges with ART. Many people with HIV are debilitated by a range of secondary infections such as TB and hepatitis. And despite advances in ART, many struggle to manage the side-effects and live functional lives.
Presently, ART consists of a one-pill-a-night regimen, as against the earlier two-pill regime. But many patients complain of hallucinations, bad dreams, sleep disturbances, skin rash, nausea and so on. In several cases, ART is given up because of an inability to manage these problems.
“Pill intake is being discontinued by those on night shifts like staff at hotels and motels, BPO workers, and factory workers on night shift,” says P Kousalya, President of the Positive Women's Network. She adds that there are some people who, for various reasons, become drug resistant after prolonged intake. “This means that the drugs don’t work in some cases,” she says.
Hailing from Namakkal, and herself being treated with 2nd-line ART (prescribed when 1st-line drugs fail to work), Kousalya is one of the country's leading voices among empowered early victims. She works to bring about changes in policy and programmes, and to help fine tune guidelines for testing, treatment and care and support systems. Currently documenting AIDS-related deaths, she says that deaths among positive women and those on 2nd line ART are increasing.
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Kousalya Periyasamy
According to Dr Arunachalam, Medical Officer at the ART Centre at the Salem General Hospital, cases of AIDS-related deaths can be directly related to people discontinuing ART or failing to take the ART drugs according to the prescribed course and dosage.
“Mortality is high only among those who discontinue drugs. Such people return when afflicted with opportunistic infections but show a strong preference for treatment of symptoms, and do not adhere to long term anti-retroviral therapy. But efforts are taken to minimize default by regular outreach,” he says.
Default in drug intake can lead to drug resistance, but adherence levels have greatly improved, resulting in a sizeable decrease in mortality rates, says Dr Ramesh, a Medical Officer at the ART Centre at the Namakkal GH.
Treatment for TB (the most common complication for persons with HIV) is now being recommended strongly for all persons diagnosed as HIV positive, irrespective of whether they are on or off ART, to ensure improved quality of life. Adopting universal ART for all persons testing positive, India has started administering ART to patients immediately after they are confirmed as HIV positive.
Dr Senthil Kumar, Project Director at the Tamil Nadu State AIDS Control Society (TANSACS), says that early detection and early commencement of ART can prolong life with fewer complications. “However when people start testing and treatment late, or experiment with alternate systems of medicines and discontinue ART, a lot of time is lost and it becomes difficult to revive the person’s impaired immunity,” he says.
While those working in the government sector often point to difficulties caused by discontinuing ART, others point out that poor socio-economic conditions can often make it difficult for people to continue treatment. What about people who are too poor to maintain a healthy diet, and lack the energy and motivation to maintain health-seeking behaviors, facing accelerated opportunistic infections that, in turn, lead to non-adherence to ART?” asks Padmavathy, director of Vahaan, an NGO working with people living with HIV.
One problem with fine-tuning and improving treatment regimens in Tamil Nadu is the lack of comprehensive data on AIDS-related deaths among ART centres. Senior officials in TANSACS say that data on deaths is not always available because ART centres have records only of patients’ visits to the centres. But, when patients get admitted to other hospitals for secondary infections and pass away, or simply stop coming, ART staff members cannot know the causes for their discontinuance. The average ‘Lost to Follow-up’ patients at ART Centres in the state currently stands at 5%, but the aim is to achieve 100% follow-ups, says TANSACS Project Director Dr K Senthil Kumar.
Reports suggest that the authorities also face difficulty in tracking and follow-up of cases of children born with HIV, losing the opportunity in many cases to tackle the infection in earlier stages.
The continuing pain of stigma
As India, and Tamil Nadu in particular, have reversed the tide of AIDS-related deaths to a significant extent, HIV is being transformed into a chronically manageable infection. However, for a significant portion of HIV survivors, this has not meant a return to fully functional lives.
Several of these people, who initially thought they would not live through their 30s or 40s, are now living on beyond their 50s. Many have seen their peers and partners succumbing to the disease. Left alone, widowed women struggle to bring up their children and support themselves. Shunned by siblings and relatives, many are fighting a losing battle for much-needed property. While they do receive free legal aid, this is not strong enough to take on entrenched mindsets. Guilt and stigma are a common experience of many long-term survivors.
Like 52-year-old Prabhakaran, who struggles not only with an inadequate income and the painful effects of long-term therapy, but also with feeling isolated from the society at large and even from the positive network which he once helped bring together. With a bloated body and a prominently bulging stomach due to prolonged medication, he says that he is unable to work to make both ends meet. Uncertain about his future, he has applied for the state government's monthly pension and depends on medication supplied by government authorities.
At a recent annual candlelight function for victims who had died of AIDS, Prabakaran looked sullen, and tears gathered in his eyes. “I planned for death, which did not come, but not for life. I would have been better prepared had I known I will survive this long” he said, giving the air of a man losing steam and turning regretful.