On the occasion of World AIDS Day, Karma Center for Counselling & Wellbeing in association with The Humsafar Trust is holding an event – Ibtida, to create more awareness and de-stigmatize AIDS as an illness.
India ranks at the third position out of all the countries in the world with the largest population living with HIV & AIDS. Because there is a general lack of knowledge and a lot of taboo related to sexuality, people living with the illness are looked at from a lens of judgment and condescension. AIDS is not just an illness today but a grave social issue which results in discrimination, judgment and stigmatization that also affects people psychologically as well as the families and friends of those with AIDS.
Ibtida is the Urdu word for a new beginning. By holding an event that talks about HIV and AIDS, the event intends to sensitize people towards it and break the silence surrounding it.
Gaysi spoke to Ms Manvi Khurana, founder of Karma Center For Counselling and Wellbeing on matters relating to AIDS and how the larger society can come together in creating a safe space of healing for those who have been diagnosed as HIV Positive.
India has the third largest HIV epidemic in the world. In 2017, HIV prevalence among adults (aged 15-49) was an estimated 0.2%. In 2017, 79% of people living with HIV were aware of their status, of whom 56% were on antiretroviral treatment (ART). The HIV epidemic in India is driven by sexual transmission, which accounted for 86% of new infections in 2017/2018. The three states with the highest HIV prevalence, Manipur, Mizoram and Nagaland are in the east of the country.
The epidemic is concentrated among key affected populations, however, the vulnerabilities that drive the epidemic vary in different parts of the country. A key driver is unprotected sex among key populations and their clients, partners and spouses. However, injecting drug use in the north and northeast of the country is also pushing HIV prevalence up.
In 2018, implementation on the HIV AIDS (prevention and control) Act 2014 began. The law criminalises discrimination against people with HIV and AIDS, including within employment, healthcare, education, public facilities and public office, as well as protecting property and insurance rights. Despite this, people living with HIV continue to experience high levels of discrimination.
Gender inequality is also an issue. Women, particularly in rural areas, have little control or decision-making powers over important aspects of their lives. This means they are often unable to negotiate protection from the risk of infection. This is an issue for the female partners of men from key populations particularly, given the concentrated nature of the epidemic. Women living with HIV are reluctant to access health care for fear of discrimination and marginalisation, leading to a disproportionate death rate in HIV women.
India is also home to arguably the largest number of orphans of the HIV epidemic. These children endure stigma and face an impenetrable barrier in many Indian societies. This situation encourages children and their guardians to hide HIV and discourages access to essential treatment services.
Q. How can one avail diagnoses and subsequent treatment in India?
In 1997, there were just 67 HIV testing and counselling (HTC) sites in India. By 2017, around 23,400 facilities were offering HIV testing and counselling. Between April 2016 and April 2017, 18.6 million general users accessed these services, surpassing India’s annual testing target of 14 million.
Testing is offered in a variety of settings including standalone clinics, health facilities and through public/private partnerships. Mobile testing units also offer community-based testing, aimed at improving early diagnosis, reaching first-time testers and people who seldom use clinical services. Community-based testing is particularly important, as the stigma of HIV and the criminalisation of populations at high risk of HIV discourages many people from attending clinics and health facilities.
HIV self-testing is not publically available. However, after the World Health Organization (WHO) recommended HIV self-testing in 2016, India’s Ministry of Health indicated it would investigate the feasibility of self-testing kits, initially among high-risk populations.
Q. How can we, as fellow human beings help to combat the stigma attached to HIV/AIDS? How does one react to a friend telling them they have HIV/AIDS? What are some best practices?
It is very difficult to receive news about your HIV status, when it’s very fresh. Especially when you have so much research to do. HIV medication is so advanced today, that life doesn’t really change for a person diagnosed with HIV. The stigma attached to the disease, on the other hand causes difference issues altogether. The person receiving news of their family/friend/acquaintance about the diagnosis should know to act with sensitivity, even if they don’t know much about the disease and what it means. It’s very likely that they would treat the opposite person as someone who was careless and shame them. Education is something that can remove the stigma, taboo and fear around HIV and what it is, and what it isn’t.
Another point to be noted is that we need to exercise ‘safer’ sex, and talk about PREP and PEP, to prevent the contraction of the virus as much as possible.
Pre-exposure prophylaxis (PrEP): PrEP is an HIV prevention tool in which an HIV-negative person takes antiretroviral medication to reduce the risk of contracting HIV. Currently, the available form of PrEP entails taking the pill Truvada, which is made of two drugs—tenofovir and emtricitabine. When these meds build up in the human body, they can stop HIV from replicating and establishing an infection.
Post-exposure prophylaxis (PEP): PEP involves taking a short course of ARV drugs, usually for a month, after a high-risk exposure. To be most effective, PEP should be started immediately after possible exposure, waiting no more than 72 hours.
Having this information handy can control the virus a lot more than we know how to in the present. Most of us do not have information until we know someone with a HIV diagnosis or until we are forced to learn from somewhere.
Ibtida is happening on the 1st of December, Saturday, 2pm Onwards (Refer to poster for more details)