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On World AIDS Day, Remember Why This Fight Is Still Important For Millions

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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.

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An ambassador and trained facilitator under Eco Femme (a social enterprise working towards menstrual health in south India), Sanjina is also an active member of the MHM Collective- India and Menstrual Health Alliance- India. She has conducted Menstrual Health sessions in multiple government schools adopted by Rotary District 3240 as part of their WinS project in rural Bengal. She has also delivered training of trainers on SRHR, gender, sexuality and Menstruation for Tomorrow’s Foundation, Vikramshila Education Resource Society, Nirdhan trust and Micro Finance, Tollygunj Women In Need, Paint It Red in Kolkata.

Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

Saurabh has been associated with YKA as a user and has consistently been writing on the issue MHM and its intersectionality with other issues in the society. Now as an MHM Fellow with YKA, he’s launched the Right to Period campaign, which aims to ensure proper execution of MHM guidelines in Delhi’s schools.

The long-term aim of the campaign is to develop an open culture where menstruation is not treated as a taboo. The campaign also seeks to hold the schools accountable for their responsibilities as an important component in the implementation of MHM policies by making adequate sanitation infrastructure and knowledge of MHM available in school premises.

Read more about his campaign.

Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

Meri Marzi aims to ensure sensitised, non-discriminatory health workers for the needs of female sex workers in the Suraksha Clinics under the UPSACS (Uttar Pradesh State AIDS Control Society) program by creating more dialogues and garnering public support for the cause of sex workers’ menstrual rights. The campaign will also ensure interventions with sex workers to clear misconceptions around overall hygiene management to ensure that results flow both ways.

Read more about her campaign.

MH Fellow Sabna comes with significant experience working with a range of development issues. A co-founder of Project Sakhi Saheli, which aims to combat period poverty and break menstrual taboos, Sabna has, in the past, worked on the issue of menstruation in urban slums of Delhi with women and adolescent girls. She and her team also released MenstraBook, with menstrastories and organised Menstra Tlk in the Delhi School of Social Work to create more conversations on menstruation.

With YKA MHM Fellow Vineet, Sabna launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society. As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Read more about her campaign. 

A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Find out more about the campaign here.

A native of Bhagalpur district – Bihar, Shalini Jha believes in equal rights for all genders and wants to work for a gender-equal and just society. In the past she’s had a year-long association as a community leader with Haiyya: Organise for Action’s Health Over Stigma campaign. She’s pursuing a Master’s in Literature with Ambedkar University, Delhi and as an MHM Fellow with YKA, recently launched ‘Project अल्हड़ (Alharh)’.

She says, “Bihar is ranked the lowest in India’s SDG Index 2019 for India. Hygienic and comfortable menstruation is a basic human right and sustainable development cannot be ensured if menstruators are deprived of their basic rights.” Project अल्हड़ (Alharh) aims to create a robust sensitised community in Bhagalpur to collectively spread awareness, break the taboo, debunk myths and initiate fearless conversations around menstruation. The campaign aims to reach at least 6000 adolescent girls from government and private schools in Baghalpur district in 2020.

Read more about the campaign here.

A psychologist and co-founder of a mental health NGO called Customize Cognition, Ritika forayed into the space of menstrual health and hygiene, sexual and reproductive healthcare and rights and gender equality as an MHM Fellow with YKA. She says, “The experience of working on MHM/SRHR and gender equality has been an enriching and eye-opening experience. I have learned what’s beneath the surface of the issue, be it awareness, lack of resources or disregard for trans men, who also menstruate.”

The Transmen-ses campaign aims to tackle the issue of silence and disregard for trans men’s menstruation needs, by mobilising gender sensitive health professionals and gender neutral restrooms in Lucknow.

Read more about the campaign here.

A Computer Science engineer by education, Nitisha started her career in the corporate sector, before realising she wanted to work in the development and social justice space. Since then, she has worked with Teach For India and Care India and is from the founding batch of Indian School of Development Management (ISDM), a one of its kind organisation creating leaders for the development sector through its experiential learning post graduate program.

As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

Let’s Talk Period aims to change this by

Find out more about her campaign here.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

A Gender Rights Activist working with the tribal and marginalized communities in india, Srilekha is a PhD scholar working on understanding body and sexuality among tribal girls, to fill the gaps in research around indigenous women and their stories. Srilekha has worked extensively at the grassroots level with community based organisations, through several advocacy initiatives around Gender, Mental Health, Menstrual Hygiene and Sexual and Reproductive Health Rights (SRHR) for the indigenous in Jharkhand, over the last 6 years.

Srilekha has also contributed to sustainable livelihood projects and legal aid programs for survivors of sex trafficking. She has been conducting research based programs on maternal health, mental health, gender based violence, sex and sexuality. Her interest lies in conducting workshops for young people on life skills, feminism, gender and sexuality, trauma, resilience and interpersonal relationships.

A Guwahati-based college student pursuing her Masters in Tata Institute of Social Sciences, Bidisha started the #BleedwithDignity campaign on the technology platform Change.org, demanding that the Government of Assam install
biodegradable sanitary pad vending machines in all government schools across the state. Her petition on Change.org has already gathered support from over 90000 people and continues to grow.

Bidisha was selected in Change.org’s flagship program ‘She Creates Change’ having run successful online advocacy
campaigns, which were widely recognised. Through the #BleedwithDignity campaign; she organised and celebrated World Menstrual Hygiene Day, 2019 in Guwahati, Assam by hosting a wall mural by collaborating with local organisations. The initiative was widely covered by national and local media, and the mural was later inaugurated by the event’s chief guest Commissioner of Guwahati Municipal Corporation (GMC) Debeswar Malakar, IAS.

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