New Delhi: For decades, the stigma around HIV/AIDS has been recognised as a significant barrier in the fight against the epidemic. In India, this stigma has been shown to cause psychological distress and act as a barrier to engagement in care, according to a study published at the National Center for Biotechnology Information (NCBI). However, things are changing, and HIV/TB activist Mona Balani has been a witness to that.
Ms. Balani spoke with the NDTV-Dettol Banega Swasth India team about her 23-year journey as an HIV positive person and the changes she has seen over the years. She said that there had been a significant reduction in the stigma surrounding HIV/AIDS, and an upgrade in treatment and related services.
Ms. Balani and her husband were diagnosed with HIV in 1999, and back then, the disease was directly linked to having a ‘loose character’ which is why the couple didn’t inform anyone about their HIV status for two years. It was only when Ms. Balani’s husband started falling sick frequently and was admitted to the hospital on a regular basis that they broke the news.
Ms. Balani said that in the 1990s, HIV meant AIDS, and it was equated with death. But in recent years, the increase in awareness and access to services has changed the lens through which society looks at people diagnosed with the infection. She said,
The HIV/AIDS terminology and friendships with HIV people have changed dramatically because people are now aware of the symptoms, transmission, treatments, and how it can be prevented in the first place.
Ms. Balani said that government programmes such as the National AIDS Control Programme (NACP), information, communication, and education (ICE) programmes have also significantly contributed to the reduction of new HIV infections.
I think there is a lot of change in terms of awareness, health services, expansion of the treatment centres, community friendly services, and much more. But there are still some gaps that need to be filled in, she added.
Talking about the importance of removing the stigma surrounding the epidemic, Ms. Balani said,
A person living with or newly diagnosed with HIV deals with self-esteem issues. Self-acceptance and societal support are sources of encouragement for them. But if we keep living in an environment filled with shame and disgrace for the infected person, it seems like a far-fetched dream. We have to have allies at every level, at the office, at home, among relatives, in society, etc., to address the stigma.
Earlier, Ms. Balani had spoken to the team about her experiences over all these years dealing with the socially constructed problems and the healthcare services related to HIV/AIDS.
Only a handful of private practitioners were providing treatment, which was quite expensive. During the process, my husband got multiple tuberculosis (TB) infections in various parts of the body. We lost all our assets on diagnosis and treatment. We did get support from the state government; Rs. 20,000 a month was disbursed to people living with HIV (PLHIV) for a period of six months, she said.
Ms. Balani and her husband couldn’t afford the HIV treatment for both, so collectively they decided to provide for her husband. Hence, the relief fund that she used to get from the government was used to purchase medicines for her husband, who breathed his last on May 26, 2005.
NDTV – Dettol have been working towards a clean and healthy India since 2014 via the Banega Swachh India initiative, which is helmed by Campaign Ambassador Amitabh Bachchan. The campaign aims to highlight the inter-dependency of humans and the environment, and of humans on one another with the focus on One Health, One Planet, One Future – Leaving No One Behind. It stresses on the need to take care of, and consider, everyone’s health in India – especially vulnerable communities – the LGBTQ population, indigenous people, India’s different tribes, ethnic and linguistic minorities, people with disabilities, migrants, geographically remote populations, gender and sexual minorities. In wake of the current COVID-19 pandemic, the need for WASH (Water, Sanitation and Hygiene) is reaffirmed as handwashing is one of the ways to prevent Coronavirus infection and other diseases. The campaign will continue to raise awareness on the same along with focussing on the importance of nutrition and healthcare for women and children, fight malnutrition, mental wellbeing, self care, science and health, adolescent health & gender awareness. Along with the health of people, the campaign has realised the need to also take care of the health of the eco-system. Our environment is fragile due to human activity, which is not only over-exploiting available resources, but also generating immense pollution as a result of using and extracting those resources. The imbalance has also led to immense biodiversity loss that has caused one of the biggest threats to human survival – climate change. It has now been described as a “code red for humanity.” The campaign will continue to cover issues like air pollution, waste management, plastic ban, manual scavenging and sanitation workers and menstrual hygiene. Banega Swasth India will also be taking forward the dream of Swasth Bharat, the campaign feels that only a Swachh or clean India where toilets are used and open defecation free (ODF) status achieved as part of the Swachh Bharat Abhiyan launched by Prime Minister Narendra Modi in 2014, can eradicate diseases like diahorrea and the country can become a Swasth or healthy India.