How Sex Workers, MSMs and Trans People Have Consistently Been Denied Timely HIV/AIDS Treatment

Posted by Shambhavi Saxena in #GoalPeBol
December 30, 2017
NFI logoEditor’s Note: With #GoalPeBol, Youth Ki Awaaz has joined hands with the National Foundation for India to start a conversation around the 17 UN Sustainable Development Goals that the Indian government has undertaken to accomplish by 2030. Let’s collectively advocate for successful and timely fulfilment of the SDGs to ensure a brighter future for our nation.

 

When the movie “Dallas Buyers’ Club” came to theatres in 2013, it brought back the conversation on HIV/AIDS. It was based on the real life of Ron Woodroof, an HIV positive Texan who began bootlegging antiviral medication in the ‘80s, at the height of the HIV/AIDS epidemic. His small operation actually changed HIV treatment in the US. In 1987, zidovudine became the first available anti-retroviral drug to treat the illness. Since then, medical intervention, globally, has been a changing landscape.

According to Avert studies, between 2010 and 2016, the global number of new HIV infections dropped by a significant 16%. But three years later, in 2016, the number of people living with HIV (PLHIV) rose from 35 million to to 36.7 million. Of that, a significant portion are in India.

A woman has blood drawn from her arm to test for HIV after her husband has begun to show symptoms of the disease.(Photo by Alyssa Banta/Newsmakers)

Since 1996, when the first antiretroviral treatments were introduced in the country, we have been trying to address one of the world’s most deadly ailments. Even today, India has committed to ending the epidemic by 2030. But there are obstacles aplenty.

Back in 2004, the government began providing free antiretroviral drugs to PLHIVs. But, as educationist and activist Vishwa Schoolwalla notes, “the paperwork and government regulations for approval of such treatment cause delay in effective provision of HIV treatment.”

All of this is seriously being watered down by a new HIV bill. Clause 14 (1) of the bill limply says medical help can only be provided “as far as possible”. And the statement has drawn sharp criticism. Tripti Tandon of Lawyers’ Collective says, “[it] gives an opening to the governments to evade any responsibility to treat patients.”

So if you can’t rely on the state for even the first line of HIV/AIDS drugs, what then? Well, be prepared to shell out INR 3,000 for a month’s supply! Many of you reading may be privileged enough to afford these treatments, but does everyone have that luxury? At-risk populations like female sex workers, men who have sex with men (MSM), and trans youth certainly do not.

Economic barriers and discrimination drastically affect one’s access to sexual and reproductive healthcare. “People do not know where to get HIV-AIDS treatment for free or at subsidized rates,” explains Schoolwalla. “Patients have to travel considerable distances to get their treatment because every healthcare center (private or public) does not cater to HIV-AIDS.”

Street-based sex workers, or those who are unattached to community-based organisations, are extremely vulnerable.: two out of five are affected by HIV/AIDS. They often receive no information, forget being able to pay for condoms or treatment. But even access to condoms may not be a deterrent . In a publication by the Interagency Working Group on Key Populations, a young sex worker said: “If we insist, some customer will ask ‘why you are asking me to use condom? Do you have any disease? Better I go to another girl.’” In the interest of her own livelihood, a sex worker may simply have to compromise her health, and, in turn, that of her clients, their partners, future children, and so on and so forth.

The economic barriers, and the risk of transmitting the illness is also true in the case of men who have sex with men (MSM), many of whom are engaged in sex work. But even for those who are not, the threats remain much the same. When Section 377 paints same-sex relations as illicit, trying to access healthcare comes at a serious risk. It’s not just facing homophobia from health professionals. We’re talking about actual arrest.

This combination of stigma and the law affects many transgender PLHIVs too. Another publication by the same Working Group revealed that “transgender people have competing health needs and may prioritize medical treatment related to gender transition, particularly if they perceive that HIV testing or treatment will cost money.”

It is difficult for sex workers to implement safe sex techniques with Indian men who do not want to use condoms. (Photo by Brent Stirton/Getty Images for the GBC)

All three populations appear to be stuck between a rock and a hard place, having to trade-off one ‘safety’ for another, but never truly being granted the right to both. These injustices aren’t the only complications. Something else we need to be aware of are “bridge populations”. The National AIDS Control Organization has identified truck drivers as one of these. As a migrant group, the potential to spread HIV/AIDS is a concern. And it cannot be staunched without some necessary steps like making condoms available at gas stations and eateries, or mandatory health check up by transport companies.

Things have gotten slightly better. Today, 20.9 million HIV positive persons now have access to antiretroviral therapy. Much of it is due to work on the ground. Bharati Dey of the Durbar Mahila Samanwaya Committee has explained that community-led awareness programmes have increased condom use, and decreased the risk of contracting HIV. For the longest time, organizations like the Naz Foundation have worked to empower PLHIVs. And most recently, a multimedia project called Safe Masti launched online, urging people to get themselves tested. In fact, they’ve collaborated with the Karma Centre for Counselling and Wellbeing to provide factual information, as well as pre-test and post-test counselling for PLHIV.

But there are hardly any other centres in India doing this work. The HIV Bill covers discrimination, confidentiality, informed consent and disclosure of HIV status, but completely skips mental health care.

People who have just been diagnosed are at significant risk of committing suicide,” says Karma founder Manavi Khurana. And this isn’t the only thing that makes mental healthcare such a crucial part of treatment. “Efavirenz,” says Schoolwalla, “which is the most commonly available, and cheapest drug used for HIV treatment, causes or aggravates depression.” These overlaps must be managed. But it won’t be easy.

Khurana points out that the infrastructure is lacking: “A lot of HIV positive people are from the lower economic strata, and we don’t have resources in the language that individuals speak.” And much like HIV medication, Khurana notes that counselling too is for the rich. Which, she adds, is in sharp contrast to the US, where free of cost counselling services and group therapy are far more accessible. Not to mention, there is less discrimination on the basis of sexuality and background.

School children use folk dance to spread awareness of AIDS in Vijayawada, India. (Photo by Brent Stirton/Getty Images for the GBC)

It might be nice to think about a Ron Woodroof of our own. But we shouldn’t have to have one. Our government has committed to ensuring universal access to sexual and reproductive health-care services by 2030. And if we want to see HIV intervention to work, we must take these two following steps. First, India needs to finance, recruit, train and retain a capable and enthusiastic health workforce. Second, as the Working Group suggests, we must “involve young people who sell sex meaningfully in the planning, design, implementation, monitoring and evaluation of services suited to their needs in their local contexts.”

Less than 1% of HIV-prevention funding is spent on programmes for sex workers, forget about other vulnerable groups. The Ministry of Health and Family Welfare ought to lead by example, and run programmes for all socially vulnerable PLHIVs.

We’ve got just over a decade to clean up our act, and the clock is ticking. So will 2018 see a vigorous move in this direction?