UNODC is cosponsor of the Joint United Nations Programme on HIV/AIDS - UNAIDS
India: Interview with Mr. Loon Gangte, President of Delhi Network of Positive People and advocate for prevention of HIV and Hepatitis C virus
The Regional UNODC Office for South Asia interviewed Mr. Loon Gangte, an active member and President of Delhi Network of Positive People (DNP+). The focus of the interview was on HIV and Hepatitis C co-infection amongst drug users. While advocating for the rights of HIV positive persons, Mr. Gangte explains why HIV and HCV co- infection are an important issue for intervention especially amongst injecting drug users (IDUs).
UNODC: Injecting Drug Users (IDUs) living with HIV face stigma and discrimination. Why do you think it is important to be open about one's status as you are?
Mr. Gangte: HIV positive Injecting Drug Users (IDUs) face a double stigma. They are marginalised and discriminated against on the basis of their drug use as well as their HIV status. Most HIV positive IDUs have to deal with the dual stigma of being a drug user as well as HIV positive. In many cases it therefore becomes very difficult for HIV postive IDUs to be comfortable with oneself. I had been leading a life with drug use for 15 years when I discovered my HIV status in 1998. I could not gather the courage to inform my family about my HIV status for four years because I was concerned about how they would react. It was difficult to break the news but with the help of the young pastor at the church in Churachandpur, I was able to do so. They were shocked but not surprised. I think it is very important to be open about one's status because it allows you to seek the right kind of medical treatment and at the earliest. Secondly it encourages others to be open with their status and seek help. If you don't disclose your status, eventually the one who suffers is the person himself. It is like wearing a tight shoe that hurts you constantly but no one is aware of your painful situation. Imagine today if people are not open about their status, there would be no prevention and treatment programmes. Being open about one's status helps in contributing to the response.
UNODC: Have you personally faced any stigma and discrimination? What is the DNP+ doing to address this problem?
Mr. Gangte: The people I lived and worked with in New Delhi for the past 12 years have been supportive despite knowing my status. However, a couple of years ago, I was patiently standing in a long queue to collect medication related to HIV in a hospital in New Delhi. It was more than an hour, till I finally inched my way to the tiny window and pushed the prescription paper. During those days, if you were HIV positive, it was stamped prominently 'HIV Positive' much like a bold seal. Seeing this, the nurse ordered me again to the end of the queue. I did not understand the reason for sending me to the end again when I had just finished waiting for more than an hour! While I stood again in line, I failed to gather why I was being singled out and discriminated against. It is much later that I realized that my HIV positive status compelled her to single me out and treat me differently. I did not understand this right away since for me being HIV positive did not mean that my rights have to be taken away. I was like any other person, if you cut my skin it will bleed, I have aspirations, the organs in my body function very much like any other man's. The presence of a tiny virus cannot make any person take away my fundamental rights.
The Delhi Network of Positive People has been working towards reducing stigma and discrimination faced by people living with HIV. Whenever any instance of discrimination is faced by their members, DNP+ with help from Lawyers Collective intervenes and addresses the issue immediately whether it is at workplace, hospital, school or family. As part of their work they have Positive Speakers who in turn highlight incidents of stigma and discrimination at various conferences as well as in workshops, school meetings, trainings and discussions. This helps in bringing attention to the issues faced by HIV positive persons. To address self stigma, DNP+ has started a self help group to provide HIV positive persons with safe spaces to meet, interact and share experiences. Over a period of time members of the support groups become active members of DNP + and champion for the rights of HIV positive persons.
UNODC: You also suffer from HCV infection. What have been your experiences in accessing treatment for HCV?
Mr. Gangte: Having both HIV and hepatitis C is referred to as co-infection. I was diagnosed with this co- infection two years back. I have been lucky that I have got funding through the International Treatment Preparedness Coalition (ITPC) for periodic Hep C testing. I am not on treatment currently. Hepatitis C virus (HCV) is an important issue for IDUs. The Hep C infection spreads rapidly among injecting drug users(IDUs) due to its high infectivity (about 10 times higher than human immuno deficiency virus (HIV), and-unlike HIV- it can be transmitted by sharing not only needles and syringes but also other injecting equipment (water, cotton, etc.) which comes into contact with and carries infected blood particles. Because HCV and HIV have similar routes of transmission (particularly through needle sharing), HCV and HIV co-infection is also common among IDUs. Co-infection causes further complications, accelerates HCV progression and complicates HIV treatment, which also makes HCV mutually a concern in HIV prevention and treatment for IDUs.
At the same time, HCV often presents no symptoms, and the vast majority of IDUs are not aware of their status as this group is not reached by services and remains outside of the health care system Thus, for universal access to be fully realized, treatment for HIV and HCV co‐infection must be provided.
UNODC: Why is advocating for HCV treatment in India so important?
Mr. Gangte: One study estimates that 92% of IDUs are infected with HCV in India.
1 Rates of HCV and HIV co-infection are high, especially in north east India. The state of Manipur is worst affected.
2 Currently there is no official, national or state wide surveillance for HCV in India. I have personally noticed that many of those infected with HIV are also co‐infected with HCV. Despite considerable prevalence, HCV diagnosis, treatment and care is largely inaccessible in India. The biggest challenge is to raise awareness about HCV among drug users and the health professionals on the HCV and HIV coinfection. The test for Hep C is costly and ranges from US $1200 - US $2100 in India. Testing for HCV can be included as part of the anonymous testing for HIV being provided through Integrated Counseling and Testing Centres (ICTC). We should consider make testing for HCV mandatory for patients who come for HIV positive tests. A HIV positive IDU is likely to have Hep C. This is seriously damaging to the body since the medication for treating the HIV virus may not be as effective. The medications used in HCV treatment, pegylated interferon and ribaviron, are costly. A six month course costs between US$4000,-US$ 5000, the life time income of ordinary Indians. Unlike HIV, where first line Antiretroviral Therapy (ART) is provided free, there is no government support or subsidy for HCV treatment. Ironically, in Manipur where HCV and HIV co-infection is high, patients are dying of liver complications, despite treatment with and adherence to ART.
WHO, UNAIDS and UNODC target setting guidelines" for countries now include treatment for Hep B and C as part of the comprehensive package of services for drug users. As always prevention is key in arresting transmission. The national and public health systems need to be supported to prevent blood borne transmission and provide HCV treatment, regardless of cost and if possible free of cost. It must be realized that the poorest of the poor infected with HCV cannot even afford cost of testing and treatment. Prices of drugs for treating HCV have to be drastically reduced. Finally, it must be recognized that the fight is not between the patent holding companies and the generic companies or patents and health but between life and death in case of life saving drugs. Our concern is for life.
Brief Profile: Mr. Loon Gangte is the president of the Delhi Network of Positive People (DNP+). DNP+ was founded in 1999 as a support group for individuals who were HIV positive. As a registered public trust, DNP+ actively lobbies for treatment access for HIV positive people and also provides services such as counseling and support services to the community.
UNODC works in India on HIV and AIDS prevention, care and treatment for injecting drug users and prison population. UNODC works with Government counterparts, non governmental organizations and networks of people who use drugs and people living with HIV and AIDS for advocating and delivering the comprehensive package of services.
Aceijas C.Rhodes T Global estimates of HCV among Injecting Drug Users. Int Journal of Drug Policy 2007,18(5),352-358
Sarkar K, Bal B, Mukherjee R, Chakarabortys, Bhattacharya SK, Epidemic of HIV coupled with HCV Injecting drug users in west Bengal, Eastern India bordering Nepal, Bhutan and Bangladesh, Substance Use Misuse 2006, 41(3);341-52