Battling disease

Cheaper drugs are helping the fight against hepatitis C in Asia, but not enough

Hidden costs of treatment and stigma associated with the diseases are still major barriers.

Providing cheap drugs against the hepatitis C virus or HCV has had limited success in fighting the disease in South-East Asia where poor health services and stigma surrounding the infection are significant barriers, says a new survey.
The survey, released to coincide with World Hepatitis Day on 28 July, showed that those at greatest risk from HCV, including injecting drug users and people living with HIV/AIDS, are least likely to access treatment despite availability of cheap drugs across much of the region over the past seven years. In Malaysia, for example, the cost of effective treatment has come down from $12,000 to $300.

HCV, which leads to liver failure, is associated with HIV/AIDS. Both are blood-borne viral diseases similarly transmitted via blood transfusions, needle sharing among IDUs and unsafe sex. Many HCV patients are co-infected with HIV, adding to complications responsible for 350,000 – 500,000 deaths globally each year.

The survey, compiled by Coalition+, a group of community activists supporting people diagnosed with HCV, identified several barriers to care, including lack of treatment centres and low awareness among healthcare professionals and the general population.
“Despite numerous policies and programmes, access to treatment remains an obstacle,” says Maria Donatelli, senior hepatitis advocacy manager at Coalition+.
Donatelli says diagnosis can take up to 10 days, a length of time many people cannot afford to stay away from work. “Technically, the diagnosis is free, but there are hidden costs. What policymakers do not understand is that it’s not people’s job to be sick,” she says.
Coalition+ interviewed 51 health professionals specialising in HCV and 240 at-risk individuals in India, Indonesia, Malaysia, Morocco and Thailand. They found that people in India and Thailand were most worried about treatment costs while patients in Indonesia, Malaysia and Morocco were concerned about time away from work. Thai respondents feared that the cost of travel and extra family care would leave them out-of-pocket.
HCV may go undetected for decades, resulting in people avoiding treatment for what they see as a minor health problem. Some 55% – 85% of patients develop chronic HCV infection, with roughly a third of them developing fatal liver cirrhosis.

According to WHO’s 2017 Global Hepatitis Report, South-East Asia accounts for around 10 per cent of 71 million people living with HCV, but barely one per cent is aware that they have the disease. An even smaller number has started treatment thanks to poor facilities and experts. For example, Indonesia’s 250 million citizens can count on just 130 hepatitis doctors.
Stigma, the other big problem identified by the report, is exacerbated by a lack of knowledge about the disease among healthcare professionals, the report says.
“Many patients are told not to hug their children and to keep their clothes separate because they think HCV can be transferred through sweat,” says Caroline Thomas, a public health specialist at Persaudaraan Korban Napza Indonesia, an advocacy group.

Thomas tells SciDev.Net that patients may avoid treatment fearing association with HIV. “Because of the long wait and the stigma, many people give up and drop out early along the treatment pathway,” she says.
The UN has a goal to eradicate HCV by 2030. The survey report suggests that hepatitis treatment be integrated with other healthcare to reduce stigma. It also asks governments to do more to educate doctors and the public about the disease while bringing health services closer to patients, especially in poorer, rural settings.
Thomas’s husband was diagnosed with chronic HCV in 2011. The couple also live with HIV, but because they were able to access treatment, their two children were born free of either virus. “We want more people to access treatment so their children can be healthy too.”

This article was first published on SciDevNet.

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Swara Bhasker: Sharp objects has to be on the radar of every woman who is tired of being “nice”

The actress weighs in on what she loves about the show.

This article has been written by award-winning actor Swara Bhasker.

All women growing up in India, South Asia, or anywhere in the world frankly; will remember in some form or the other that gentle girlhood admonishing, “Nice girls don’t do that.” I kept recalling that gently reasoned reproach as I watched Sharp Objects (you can catch it on Hotstar Premium). Adapted from the author of Gone Girl, Gillian Flynn’s debut novel Sharp Objects has been directed by Jean-Marc Vallée, who has my heart since he gave us Big Little Lies. It stars the multiple-Oscar nominee Amy Adams, who delivers a searing performance as Camille Preaker; and Patricia Clarkson, who is magnetic as the dominating and dark Adora Crellin. As an actress myself, it felt great to watch a show driven by its female performers.

The series is woven around a troubled, alcohol-dependent, self-harming, female journalist Camille (single and in her thirties incidentally) who returns to the small town of her birth and childhood, Wind Gap, Missouri, to report on two similarly gruesome murders of teenage girls. While the series is a murder mystery, it equally delves into the psychology, not just of the principal characters, but also of the town, and thus a culture as a whole.

There is a lot that impresses in Sharp Objects — the manner in which the storytelling gently unwraps a plot that is dark, disturbing and shocking, the stellar and crafty control that Jean-Marc Vallée exercises on his narrative, the cinematography that is fluid and still manages to suggest that something sinister lurks within Wind Gap, the editing which keeps this narrative languid yet sharp and consistently evokes a haunting sensation.

Sharp Objects is also liberating (apart from its positive performance on Bechdel parameters) as content — for female actors and for audiences in giving us female centric and female driven shows that do not bear the burden of providing either role-models or even uplifting messages. 

Instead, it presents a world where women are dangerous and dysfunctional but very real — a world where women are neither pure victims, nor pure aggressors. A world where they occupy the grey areas, complex and contradictory as agents in a power play, in which they control some reigns too.

But to me personally, and perhaps to many young women viewers across the world, what makes Sharp Objects particularly impactful, perhaps almost poignant, is the manner in which it unravels the whole idea, the culture, the entire psychology of that childhood admonishment “Nice girls don’t do that.” Sharp Objects explores the sinister and dark possibilities of what the corollary of that thinking could be.

“Nice girls don’t do that.”

“Who does?”

“Bad girls.”

“So I’m a bad girl.”

“You shouldn’t be a bad girl.”

“Why not?”

“Bad girls get in trouble.”

“What trouble? What happens to bad girls?”

“Bad things.”

“What bad things?”

“Very bad things.”

“How bad?”

“Terrible!!!”

“Like what?”

“Like….”

A point the show makes early on is that both the victims of the introductory brutal murders were not your typically nice girly-girls. Camille, the traumatised protagonist carrying a burden from her past was herself not a nice girl. Amma, her deceptive half-sister manipulates the nice girl act to defy her controlling mother. But perhaps the most incisive critique on the whole ‘Be a nice girl’ culture, in fact the whole ‘nice’ culture — nice folks, nice manners, nice homes, nice towns — comes in the form of Adora’s character and the manner in which beneath the whole veneer of nice, a whole town is complicit in damning secrets and not-so-nice acts. At one point early on in the show, Adora tells her firstborn Camille, with whom she has a strained relationship (to put it mildly), “I just want things to be nice with us but maybe I don’t know how..” Interestingly it is this very notion of ‘nice’ that becomes the most oppressive and deceptive experience of young Camille, and later Amma’s growing years.

This ‘Culture of Nice’ is in fact the pervasive ‘Culture of Silence’ that women all over the world, particularly in India, are all too familiar with. 

It takes different forms, but always towards the same goal — to silence the not-so-nice details of what the experiences; sometimes intimate experiences of women might be. This Culture of Silence is propagated from the child’s earliest experience of being parented by society in general. Amongst the values that girls receive in our early years — apart from those of being obedient, dutiful, respectful, homely — we also receive the twin headed Chimera in the form of shame and guilt.

“Have some shame!”

“Oh for shame!”

“Shameless!”

“Shameful!”

“Ashamed.”

“Do not bring shame upon…”

Different phrases in different languages, but always with the same implication. Shameful things happen to girls who are not nice and that brings ‘shame’ on the family or everyone associated with the girl. And nice folks do not talk about these things. Nice folks go on as if nothing has happened.

It is this culture of silence that women across the world today, are calling out in many different ways. Whether it is the #MeToo movement or a show like Sharp Objects; or on a lighter and happier note, even a film like Veere Di Wedding punctures this culture of silence, quite simply by refusing to be silenced and saying the not-nice things, or depicting the so called ‘unspeakable’ things that could happen to girls. By talking about the unspeakable, you rob it of the power to shame you; you disallow the ‘Culture of Nice’ to erase your experience. You stand up for yourself and you build your own identity.

And this to me is the most liberating aspect of being an actor, and even just a girl at a time when shows like Sharp Objects and Big Little Lies (another great show on Hotstar Premium), and films like Veere Di Wedding and Anaarkali Of Aarah are being made.

The next time I hear someone say, “Nice girls don’t do that!”, I know what I’m going to say — I don’t give a shit about nice. I’m just a girl! And that’s okay!

Swara is a an award winning actor of the Hindi film industry. Her last few films, including Veere Di Wedding, Anaarkali of Aaraah and Nil Battey Sannata have earned her both critical and commercial success. Swara is an occasional writer of articles and opinion pieces. The occasions are frequent :).

Watch the trailer of Sharp Objects here:

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This article was published by the Scroll marketing team with Swara Bhasker on behalf of Hotstar Premium and not by the Scroll editorial team.