Even As HIV Treatment Enters New Era, The Stigma Won’t Die

Imagine a future where an HIV positive individual requires one simple injection a year, and lives their full life without the virus being detected in their blood stream, or without the fear of transmitting the virus to someone else.

Imagine a gene-editing tool, much like the editing apps we use to edit our photographs for social media, which, like removing blemishes from a photograph, removes HIV completely from infected human cells.

When it comes to the treatment of the Human Immunodeficiency Virus or HIV, that future is now. Gone are the days when an HIV diagnosis was compared to a death sentence. We have moved beyond daily pills, to more convenient long acting medications like the antiviral Lenacapavir, which requires just two doses a year for an HIV positive patient to maintain an undetectable viral load. Gene editing techniques like CRISPR/Cas9 have successfully removed HIV from infected human cells, and early clinical trials in humans have shown promising results.

While the incredible scientific progress made in the field of HIV treatment is nothing short of remarkable - the stigma, both self and external, associated with this infection, somehow refuses to go away, particularly here in India. As a Physician dealing with HIV positive patients regularly, I notice that my patients fear the stigma more than the disease itself. As easy as it is to treat the virus, it's equally difficult to ease the emotional burden my patients carry, often due to the lack of information available, as well as a lack of awareness among the medical fraternity in general. It's unfortunate - but I've had many a patient come to me after being reviewed by some of the most prominent doctors in our country who are otherwise brilliant, but have commented on how 'living with HIV makes you dirty', or 'you should change your lifestyle, God didn't intend for you to be this way'.

To understand this deep-rooted fear of the disease, I went back 18 years in time & revisited my life as an intern in Calcutta National Medical College in 2007. Back in the day we were rarely ever posted in a ward with HIV positive patients - even if we were, we were well informed to be extra careful, as these patients were deemed almost untouchable. How would you expect a generation of doctors like me (as well as our seniors) to understand the difficulties faced by patients living with HIV, when it has been ingrained in us during our formative years that living with HIV is an abomination?

The HIV AIDS Act of 2017 mandates measures to actively prevent the spread of HIV, & to promote awareness. Laws have always existed, however it's the implementation of these laws through sensitisation of the medical community, which is thoroughly lacking in our country. The implementation has to start from grassroot levels - which includes modifying the curriculum, sensitising medical students, interns & young doctors to issues faced by people living with HIV. It's also crucial to reach out to the senior doctors in our country & sensitise them as well.

Apart from sensitisation, the lack of correct information plays a major role in spreading the stigma against the virus. How many of you are actually aware of the fact that there are medications easily available to take in case you have been accidentally exposed to HIV, that will kill the virus completely if taken correctly & on time? Called Post Exposure Prophylaxis (PEP) - it's a pill consisting of three antivirals together, taken within 72 hours of exposure, and for 28 days. The pill will ensure you do not get infected with HIV even after a significant exposure to the virus. The side effects are zero to negligible. The panicked calls & fear in my patients' eyes confirm that neither is this information available easily, nor is the medical community in India properly aware of the correct medications and usage that could potentially save thousands of lives.

Similarly - there are medications available for individuals susceptible to repeated exposure to HIV that, if taken correctly & regularly, would prevent them from getting the virus at all. Called Pre Exposure Prophylaxis (PrEP) - it's a simple pill consisting of two antivirals, easily available at all pharmacies. The pill ensures that an HIV negative individual would not be infected by an HIV positive person, irrespective of unprotected & repeated exposure.

I do not recollect seeing any advertisements in India either from the government or from pharmaceutical companies promoting the use of PEP or PrEP - which would have easily saved thousands of lives, had the information reached the general public.

The fight against HIV/AIDS has been long & arduous, and HIV is not the formidable foe that it once used to be. With the right education, early treatment & sensitisation, and better access to healthcare, there's light at the end of a very long & dark tunnel. However, the global response to HIV is facing its worst setback in decades, thanks to abrupt funding cuts & a deteriorating human rights environment. Let's hope our global leaders choose to reaffirm solidarity & continue funding HIV research, instead of undoing decades of hard work. Millions of lives depend on their decision. As Kofi Annan rightly said,"The global HIV/AIDS epidemic is an unprecedented crisis that requires an unprecedented response. In particular it requires solidarity - between the healthy and the sick, between rich and poor, and above all, between richer and poorer nations. We have 30 million orphans already. How many more do we have to get, to wake up?"