Tuesday, October 9, 2012

Living Positively with HIV: Snapshots from my life: by Hari Singh, National GIPA Coordinator

Living Positively with HIV: Snapshots from my life: by Hari Singh
National GIPA Coordinator, Indian Network for People Living with HIV/AIDS,
Executive Board Member Dnp+

Having lived with the knowledge of being HIV positive for nearly two decades, I can convincingly say that poverty, hunger and unemployment are bigger diseases than HIV. As a disease, or rather as a condition, HIV can be managed if one is aware, enthused and backed by a supportive community. Today, by virtue of holding the position of National GIPA Coordinator, I am well placed to serve the needs of my community. I have battled many odds and challenges but at the end of the day, I am fortunate that I can, with the support of my family and friends, be strong, healthy and enthusiastic about my present and future. In the paragraphs below, I will share snapshots of my life’s journey of 41 years, and you will see that my most significant and eventful years have been as an HIV positive person.

I have survived and battled economic crisis and failing health. I had to cut short a promising career in wrestling in order to provide a respectable future for my family. Apart from learning to manage my finances I have also set up a trust for my younger daughter, who is mentally challenged. Having lived with HIV for over 15 years, I have seen the government National AIDS Control Programme evolve, treatment regimens mature and stigma and discrimination come down thanks to enhanced awareness and advocacy. I have seen many of my contemporaries die and their families reduced to penury and an undignified existence.

My biggest contribution to the world of a PLHIV, if at all, will be in restoring some of that dignity back – through the pressing of employment schemes for HIV widows, free travel concessions and free medication. I am convinced that HIV is no bigger disease than Thalassemia, Cancer or Tuberculosis. Rather, it is poverty, unemployment, adulteration and illiteracy that are terminal illness, eroding and crushing as they do, the human spirit.

Initial years

My father was an army officer and I was the only child. We lived an idyllic life in a  village on the outskirts of Delhi. My father was a farsighted man. When he retired from the Army, he had three sources of income – pension, rent from a property and a small milk dairy, where he had his own buffalos. I was interested in wrestling and my family supported me to pursue it as a hobby. Though I did study till Class XII, I was always more into sports. I was quite the local hero, winning wrestling matches and being invited to wrestling events around the country. It eventually became a career option for me.

Marriage and beyond

My mother suffered from asthma and when she got Tuberculosis, there was pressure on me to wed, so that my wife could keep her company and share the domestic chores. In 1988, when I was 18 years old, I got married. My mother died a year later. That is when my world got destabilized. My father shifted to a village where he built a temple in the memory of my mother, devoting himself to humanitarian causes. Since I was not interested in the buffalo business, he was forced to sell it. Financially, we were now dependent on my erratic income from wrestling and the rent that came in. My father fell sick in 1994 and was detected with brain tumor. We brought him to Delhi where he was treated at the Army Base Hospital. but he never fully recovered and died in 1995.

Knowledge of HIV status

Around 1994-95 I started getting different Opportunistic Infections (loose motions, mouth ulcer), which I kept getting treated for by local doctors who gave me multivitamins and antibiotics but did not refer me to a government hospital for an HIV test. I also lost about 15 kg weight. It was only when my wife complained of a swelling in her uterus that we went to her gynecologist Dr Sushma Gupta. She was godsend, for she asked me to go in for an HIV test. I was detected positive. At that time there was little awareness around the disease. I and my wife were convinced I would die within a few months. But Dr Gupta was very reassuring. She told me I was very lucky that my wife and two daughters were HIV negative. She referred me to RML hospital, reassuring me that treatment was available and I should cooperate fully with the doctors.

I stopped going out of the house and even gave up wrestling. I would make up excuses saying I had TB or kidney problem. My overriding concern at that time was how to mobilize money for my treatment. My CD4 count was only 26 and the medicines I had been prescribed were to the tune of Rs 20, 000. After a lot of thinking and consultation with my wife, we decided to liquidate part of our property. We lived on a 200 sq yard plot. We sold 100 sq yards for Rs 20 lakh. I invested Rs 10 lakh in different post office schemes and fixed deposits, using the interest to run the house and used the remaining Rs 10 lakh to construct a three-level property. While the lower level was leased to a commercial shop, we lived on the first level and had tenants on the second level. I now had money for my medicines and also an assured income to take care of the house and my children’s’ education.

I braved the initial hurdle of overcoming the after effects of medication and saw my CD4 count going up and OI decreasing. In 1998 I got TB but I took treatment for it. In 2007 my blood count came down to 5. I received two units of blood and my medicine combination was changed. I gradually gained weight and became healthy.

You are what you eat

Nutritious diet is the mainstay of a PLHIV. When my blood count dropped, I realized I had to alter my entire thinking process and change my food habits. For a wrestler used to having a lavish spread of 4-5 kg milk; 100 gm crushed almonds in the morning and at night; half a kg of juice; 100 gm pure ghee, I came down to having 2 cups of milk daily, 2 rotis, veggies, salads and fresh fruits. I cut down ghee and started having single toned milk. I did the Art of Living course and followed Swami Baba Ramdev’s advice on eating, thinking and living healthy. As of today, I do not miss a meal, I carry home cooked food and I fit and energetic.  

Induction into the world of HIV/AIDS as an activist

Since Bill Clinton’s fateful visit to India in 2004 on World AIDS Day, I have been in the forefront of issues relating to PLHIVs through multiple platforms – Delhi Network for Positive People (DNP+), Delhi State AIDS Control Society (DSACS), Indian Network for Positive People (INP+) and now Greater Involvement of People Living with or Affected by HIV/AIDS (GIPA).

In 2004, Dr Rewari who was looking after ART in RML hospital told me that Bill Clinton was scheduled to visit and if I would be willing to step forward and meet him
I agreed and decided to play a more active role, for I saw there were thousands of PLHIV like me, many directionless and a strong advocate from amongst the community would make a difference to their cause. I started by joining as an office assistant in a Drop-in-Centre at DSACS. I received much training on leadership and life skills. The LAMP (leadership and management proficiency) training from UNDP was particularly useful. Next, I joined DNP+ as a counselor for a project on trafficking and HIV/AIDS and later as an outreach worker with DSACS in their mother to child project in the ICTC.

Our efforts helped in getting the government to fast track a scheme which would ensure that all PLHIV have a BPL card. All papers have been submitted and Delhi which has 7000 people on ART would be the first ones to get the card. Travel concession of 50% by train is already mandated for PLHIV. We want to push that concession to75% and eventually make it 100% free. In 2005-06 I had gone on dharna, demanding that medicines be provided free of cost to PLHIV. We also took up the patents issue when Novartis was the only company to be providing medicines. We did not want just one company to have that monopoly. We succeeded in winning the case under Section 3D in 2006. Competition and multiple pharma companies being allowed to research, produce and market formulations is a good thing for us, because it helps in keeping prices low.

I received a fellowship from Action Aid where I put together a list of 45 widows and sent it to the Government of India, urging them to employ them in some capacity since they were disadvantaged – their right to property had been forfeited and many had been thrown out of their homes. While I was here I got an offer to join INP + as a National GIPA Coordinator. Since February, 2010, I am handling this prestigious and hugely important role.

I have just completed my Diploma in HIV/AIDS from IGNOU and have enrolled for a Bachelors in Social Work. I donated my eyes 30 years ago and am now considering donating my body towards research.

What it means to be a National GIPA Coordinator

I am responsible for identifying and appointing a GIPA coordinator at the state and district level. I am in touch with Project Directors at SACS and with Positive Networks and am trying to see how to increase meaningful involvement of GIPA. A GIPA task force has to be established in every state and we have to outline more clearly a GIPA’s scope of work. A national level training workshop for GIPA is my next plan for we have to equip them to act as a bridge between SACS and positive networks. For this, I am in touch with the mainstreaming division at NACO. I feel GIPA should be hired in every state, even those which are low prevalence. Efforts are being made to increase the role of PLHIV in the many committees which are constituted at the SACS level (HIV-TB Committee; NACO Committee; ART Committee etc).

Battling stigma and discrimination

In 1995 when I was still trying to come to terms with my positive status, a neighbour instigated me with lewd comments on my positive status, refraining new entrants in the neighbourhood to interact with me. At that time I lost my cool, and the fracas led to a police case. The humiliation and the insult still sting me. I became a recluse for a while and even put blinds on my terrace, shielding myself from the glare of the  outside world. It took me a long time to recover. Stigma and discrimination for a PLHIV first starts at home. I was fortunate that my wife has been my bedrock of support all through. However, my daughters do feel a bit scared, when I wear my “I am Positive” t-shirt. To reassure them, I wear a jacket when I step out of the house, and simultaneously try to build their confidence. They also used to feel scared for me, every time I would wear a cap or a tie pin that had the red trademark ribbon of HIV. But today they have learned to accept it.

Personal beliefs

I am of the opinion that health should be made a compulsory subject in schools and colleges. Right now it is more of an ad hoc issue taken up through sex education or as part of a clinical study in Biology. Sex and sexuality are issues that are as natural and important as say learning about chemical formulations and mathematical equations. Equipping young people with knowledge on safe sex should be a major part of the curriculum if you want a safe and healthy society. Had I received this information when I was still in my late teens, I might have been HIV-free.

Another strong conviction of mine is that no man should have to die hungry, unemployed and without treatment. Ensuring economic security for PLHIV is one of my overriding concerns because I know what it  means to not have money for medicines, food and privacy of home. Which is what prompted me to be an activist, organising rallies that could demand this fundamental right. I am glad, the last one I did on 4th May, 2010, resulted in an MoU being signed between Infrastructure and Leasing Financial Services Ltd (ILFS) and NACO, as part of a PPP initiative to hire PLHIV across the country.

Advice for fellow PLHIV

Learn to love yourself. Also, draw up your own survival plan based on your unique circumstances. While there are people like us fighting for your cause, you have to take charge and be prepared to fight your own battles. The biggest inspiration for anyone from my life story should be to see for themselves that I have outlived all predictions. In 15 years of survival as a PLHIV, in no way do I feel that my energy levels are lower or that my body has been wasted.

Warm Regards,

Hari Singh
National GIPA Coordinator
Indian Network for People Living with HIV/AIDS
Executive Board Member Dnp+

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