“I didn’t choose HIV. HIV chose me…” An Activist’s Reflection on 10 Years of Free ART in India
Pre ART: 1986 to 31st March 2004
“You have AIDS,” a counselor said to me in 1997. I don’t remember the exact date, but suddenly everything went blank. The counselor had spoken to me for more than 20 minutes, but I just remembered his one sentence: “You have AIDS.” Only one thing came to my mind: everything is finished. I cursed God. Why did He choose me? Why only me?
My first question was, “How long I will live?” He started calculating and replied, “You have another two years.” I was relieved. I was thinking that I would die in two months. I asked my next question, “Is there any treatment?” The counselor told me, “Don’t even think about medication. It costs Rs. 60,000/- per month.”
Where would I get the money? After much thinking, I made a plan. I took a life insurance policy for Rs. 5,00,000/- and decided to commit suicide. At least my family will get some money after my death. Twice I attempted suicide, but luckily or unluckily, I survived.
Then came a turning point in my life. I chanced upon the famous Hindi movie “Anand.” Rajesh Khanna’s words in the movie completely changed my whole perception and attitude towards life: “What’s the difference between 70 years and six months? What about the millions of moments I will live in the next six months? Life should be large not long.” (“Kya farak hai 70 salon aur 6 mahine mai? Aane wale 6 mahino mai jo lakho pal mai jine wala hun uska kya hoga? Zindagi badi honi chahiye, lambi nahi.”)
I began my search for accurate, scientific information on AIDS and ended up at National AIDS Research Institute (NARI). I got answers to my questions, sometimes silly ones. I still remember the smile on the doctor’s face and his occasional chuckle.
In August 1999, I started working with networks for people living with HIV (PLHIV). This gave vision and purpose to my life. To this day, I remain thankful for the support of my peers, doctors and friends on positive living, which has kept me strong even before anti-retroviral treatment (ART) was available and affordable for me. I decided to work on HIV. I wanted to make a difference, but I also wanted to make sure that none of my family or friends get infected.
As time passed, there were many sad moments. I lost close friends who could not afford ART. Each death created fear and weakened my confidence. Yet, somehow I gathered courage to advocate for the rights of PLHIV and for ART. We started raising our voices on every platform and at every forum we could find.
Post ART: 1st April 2004 onwards
On World AIDS Day, 1st December 2003, the government announced free ART. The programme would start from 1st April 2004. Though I was not yet on treatment, it gave all PLHIV so much hope. Now we will could imagine a future in which we would not die of AIDS.
Take the case of my close friend Prashant. His CD4 had dipped down to a single digit in 2003, but he is still with us, healthy and content. His two sons have started collage. Last year he gave me sweets saying that his younger son got 74% marks in 12th standard at school, and both of them were going to take admission in college. Tears came rolling down, and we just hugged each other. There was no need for any words. There were only feelings to understand. The hug was for a healthy and productive life, which was possible because of free ART.
There are many such success stories that might not be published in any report. Free ART is not just medication we swallow twice a day. These pills are hope and confidence to live productively in good health. ART and PPTCT interventions have brought happiness and wellbeing to the lives of millions.
In January 2014, we were remembering this journey, when one of our friends gave the idea of celebrating ten years of free ART. “What a wonderful thought!” I said to myself. Suddenly the amazing journey of past ten years came to life again. This small, informal discussion took shape into a big occasion in April 2014 – Treatment@10 – to convey the gratitude of the PLHIV community. These ten years would not have been possible without the hard work, commitment and passion of so many people, organizations, and partners. Together we have made our county’s care, support and treatment program a model for the rest of the world.
India’s ART program will continue to grow stronger. The commitment to expand care & support services is transformative. The new Vihaan Care & Support Centres are testament to how closely government, civil society and the PLHIV community can work together to expand access to services, increase treatment adherence, reduce stigma and discrimination, and improve the quality of life of PLHIV and their families.
My own journey of 21 years still surprises me. What a fantastic, wonderful and meaningful journey it has been. Now I thank God. I am proud to be HIV positive and proud of my country, my government, and my community for bringing us so far in ten years. I didn’t choose HIV. HIV chose me to be a mediator, an activist, and an agent of positive change.
The author of this blog, Manoj Pardeshi, is General Secretary, National Coalition of People Living with HIV in India (NCPI+). Living with HIV for more than two decades, Manoj has been at the forefront of raising public awareness about HIV, fighting discrimination against PLHIV, and advocating for increased action to by government and other stakeholders to expand access to treatment, care, and support services across India.
NCPI+ is a national representative body of, for and by PLHIV. NCPI+ aims to increase active, transparent and constructive participation of PLHIV and health activists to strengthen care, support and treatment across the country and improve the quality of life of individuals and families affected by HIV. NCPI+ serves to represent the needs of PLHIV networks and organisations for key population and works with activists to join together to speak with a clear voice, strengthen advocacy, and improve the health and quality of life of PLHIV in India.