Feature Story

A version of this story was first published at www.unodc.org

AIDS activist Loon Gangte raises awareness of HIV and Hepatitis C co-infection

Loon Gangte is President of the Delhi Network of Positive People (DNP+) and a strong advocate of HIV and Hepatitis C (HCV) prevention. In an interview with the Regional South Asia office of the United Nations Office on Drugs and Crime (UNODC), he explains why HIV and HCV co-infection, especially among injecting drug users, is an issue needing urgent intervention. He begins with his views on stigma and discrimination.

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?

LG: HIV-positive injecting drug users face a double stigma. They are marginalized and discriminated against on the basis of their drug use as well as their HIV status. In many cases it therefore becomes very difficult for HIV-positive IDUs to be comfortable with themselves. 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 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 at the earliest opportunity. Secondly, it encourages others to be open about their own status and seek help. If you don't disclose your status, eventually the one who suffers is you. It is like wearing a tight shoe that hurts 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.

UNODC: Have you personally faced any stigma and discrimination? What is the DNP+ doing to address this problem?

LG: The people I’ve 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 HIV medication in a hospital in New Delhi. It was more than an hour before I finally inched my way to the tiny window and pushed the prescription paper through. During those days, if you were living with HIV, it was stamped prominently 'HIV- Positive', much like a bold seal. Seeing this, the nurse ordered me to the end of the queue again. While I stood back in line, I couldn’t work out why I was being discriminated against. Much later 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 am 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 anyone take away my fundamental rights.

The Delhi Network of Positive People has been working on treatment advocacy and towards reducing the stigma and discrimination faced by people living with HIV. Whenever any instance of discrimination is faced by members, DNP+, with help from the Lawyers Collective, intervenes and addresses the issue immediately, whether it is at the workplace, hospital, school or in the family. As part of their work they have Positive Speakers who highlight incidents of stigma and discrimination at various conferences as well as in workshops, school meetings, trainings and discussions. This helps bring attention to the issues faced by HIV-positive people. To address self stigma, DNP+ has started a self help group to provide those living with HIV 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 the rights of those who are HIV-positive.

UNODC: You are also living with Hepatitis C infection. Describe your experiences in accessing treatment for HCV.

LG: Having both HIV and Hepatitis C is referred to as co-infection. I was diagnosed with this co- infection two years ago. I have been lucky that I have got funding through the International Treatment Preparedness Coalition for periodic Hep C testing. I am not on treatment currently. Hep C infection spreads rapidly among injecting drug users due to its high infectivity (about 10 times higher than HIV, and—unlike HIV—it can be transmitted by sharing not only needles and syringes, but also other injecting equipment such as water, cotton, etc). Because HCV and HIV have similar routes of transmission (particularly through needle sharing), co-infection is common among injecting drug users. Co-infection causes further complications, accelerates HCV progression and makes HIV treatment more difficult.

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 being 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?

LG: One study estimates that 92% of injecting drug users is infected with Hepatitis C in India . Rates of HCV and HIV co-infection are high, especially in the north east of the country. The state of Manipur is worst affected . Currently there is no official, national or state-wide surveillance for Hep C in India. I have personally noticed that many of those infected with HIV are also infected with HCV. Despite considerable prevalence, HCV diagnosis, treatment and care are largely inaccessible here.

The biggest challenge is to raise awareness about HCV and HIV co-infection among drug users and health professionals. 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 Counselling and Testing Centres.

The medications used in HCV treatment, pegylated interferon and ribaviron, are expensive. A six month course costs between US$ 4 000—5 000; the lifetime income of some 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.

The WHO, UNAIDS and UNODC target setting guidelines for countries now include treatment for Hepatitis 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: many infected with Hepatitis C cannot afford the cost of testing and treatment. Prices of drugs for HCV have to be drastically reduced.

UNODC works in India on HIV prevention, care and treatment for injecting drug users and prison population. UNODC works with Government counterparts, non governmental organizations, networks of people who use drugs, and people living with HIV and advocates for delivering comprehensive packages of services.