Held on December 1 annually, the world is commemorating World AIDS Day for the 28th year. While India has come a long way in tackling its AIDS crisis, the day is important for all of us, regardless of our association with the illness, to come together in solidarity against an epidemic that has taken away millions of lives globally. The day is also a rallying cry for all those working in government as well as civil society about the challenges that still remain – assisting those living with HIV, preventing another epidemic (the first one began sometime in the ‘80s) through relevant and accessible prevention messaging, raising money and awareness and fighting the stigma and discrimination.
While it may not seem as much of a problem anymore, the AIDS crisis was and continues to be a tale of tragedy, vitriol and intense prejudice. Not just in numbers, but in real lived experiences. It was not so long ago that it was called a ‘gay plague’ in homophobic America, and according to former Union Health Minister Dr. Harsh Vardhan, it is still tagged as a ‘sex worker’ disease or something that people who ‘cheat’ in marriages get.
Despite all the reports on how much ‘progress’ India has made, complacency is not the way to go from here. Not when AIDS deaths rose by 35% in the last three years despite a fall in the number of newly infected people, and not when only 55% of AIDS patients in the country have access to life-sustaining treatment.
Cake spoke to Anjali Gopalan, founder and executive director of the Naz Foundation Trust, a Delhi-based organisation dedicated to fighting HIV/AIDS. She said, “HIV is no longer the flavour of the month. Donors have pulled out. The government is not funding it as much as it used to.”
On a similar note, Ashok Row Kavi, founder of Mumbai-based Humsafar Trust told Cake: “The government has indeed done commendable work by investing over ₹2 billion in India’s HIV prevention program for the last five years but that is not enough. What is required is a sustained investment to keep the prevention program going. This is what is lacking. There is a form of exhaustion and lack of interest in keeping the program going.”
Working in tandem with community-based organisations (CBOs) and non-governmental organisations (NGOs) has been a successful model for most governments across the world in tackling AIDS but things have changed since 2014. Anjali said that she “no longer know[s] what’s happening.” With her foundation having always worked with various governments, presently, a lot remains unclear. “If [the government] do[es]n’t work with civil society, we’ll be undoing all the progress we have made.”
The Modi government has indeed cut down on social spending almost prematurely especially when the rate of prevalence among the most vulnerable groups – intravenous drug users (IDUs), MSMs, trans people and sex workers – are still not stable and are spiralling out of control. And it does not help when all the key groups suffer from some form of criminalisation and discrimination. Section 377 affects MSMs and trans people, the Immoral Traffic (Prevention) Act affects sex workers and The Narcotics Drugs and Psychotropic Substances Act criminalises IDU. “How do you value yourself if you are labelled a criminal?” asked Gopalan.
In an effort to improve accessibility to testing, the WHO is now endorsing the self-diagnosis of HIV through a kit. While many view it as groundbreaking, it is also being viewed with caution and even worry. Primarily because many are still not aware about basic facts of the illness and how to access first-line treatment without the fear of prejudice. Gopalan stressed on how “AIDS is not a death sentence anymore,” explaining “the last thing you want is someone to find out by themselves and hang themselves.”
Citing the “immense stigma surrounding HIV,” Shruta Mengle Rawat, research coordinator at Humsafar Trust said, “In an system that offers self testing in non-clinical set ups, one needs to explore options of linkage to care for people who test positive. This is an immense challenge even in clinical set ups where there are (extremely limited) resources to link people to post-test care.”
In a new age, we are also now seeing newer and more complicated issues surrounding the tackling of HIV. Drug resistance to treatment for HIV, which is already a major issue in the West, is beginning to show signs in India. Kavi pointed out that drug resistance to anti-retroviral therapy (ART) is already around 11% for first-line treatment. And this is not without precedent in India as drug-resistant tuberculosis gains strength.
Therefore timing, access to funding, and second-line treatment becomes key. But roadblocks are many in number. “Stock-outs in ART Centers is becoming alarmingly commonplace and is now a regular feature,” said Kavi. The HIV and AIDS (Prevention and Control) Bill, 2014 has a clause that says that the government will provide medical coverage only “as far as possible.” The vague nature of this clause speaks volumes about the commitment on behalf of the State to further the fight against HIV.
Needless to say, it is because of such a context that World AIDS Day becomes all the more important simply because it is needed to remind people in power positions that HIV has not gone away and turning your attention away from it won’t make it vanish into thin air. We can never get ‘bored’ of dealing with it because real lives and real lived experiences are at stake here. And most importantly, vulnerable groups are not just “transmitters” or potential transmitters, these are humans with individual subjective identities.
Featured Image Source: Nic Holas/Twitter.