What Difference Does Discrimination Make? Reflections for World AIDS Day 2013

Lord Fowler during his visit to Lakshya Trust in Surat, Gujarat. (Photo: India HIV/AIDS Alliance)

Lord Fowler during his visit to Lakshya Trust in Surat, Gujarat. (Photo: India HIV/AIDS Alliance)

I have just returned from a visit to India to see what is being done in tackling HIV and AIDS. Back at the start of the epidemic in 1986 I was health minister in Britain. We carried out a very high profile public education campaign using television, radio, poster sites to get the message through. We sent leaflets to every home in the country. Remember at this time there was no treatment. If you contracted HIV it was so often a death sentence.

But of course we were a relatively small country. India has a massive population of well over a billion and a vast area to cover. It is enormous credit to those early public health activists and to their successors on what has been accomplished. The creation of the National AIDS Control Organisation in itself was a massive achievement. Unlike some countries I have visited over the last 18 months there has been close cooperation with civil society organisations like India HIV/AIDS Alliance and many others. India put prevention first and the figures tell the story.

There has not been the explosion we have seen in Sub Saharan Africa where in one country almost a quarter of the population are infected. There may be two million people in India with HIV but compared with the population, prevalence is remarkably low. If you take injecting drug users then India has followed the sensible policy of providing clean needles. This should eliminate the spread of the infection by dirty needles being shared.

Does this mean then that all the problems in India have been solved? Of course not. No country can claim that. We still have a major problem of discrimination and stigma when it comes to  sexual minorities. Drug users are often treated with contempt as are transgender people who face particular prejudice. Sex workers continue to be exploited – although HIV transmission has fallen due to the vastly increased use of condoms. Men who have sex with men are still widely condemned.

And what difference does such discrimination make? It means that many men and women are unwilling to come forward for testing. They fear what the impact may be on their lives if it is known that they are positive. They fear the reaction in their families, in their communities and at work. And the effect is this: They are undiagnosed and continue to spread the virus. HIV and AIDS continue to increase. Deaths mount.

Of course this is not just a problem in India. It is a problem in every country in the world that I have visited. On this World AIDS Day we should vow to fight the discrimination and the stigma – and make a new effort to get people to test and get on treatment as it becomes more and more available. HIV is no longer a death sentence but the earlier a man or woman goes into treatment the longer life will be.

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The author of this blog, Lord Norman Fowler, was a member of Margaret Thatcher’s Cabinet and served as chairman of the Conservative Party under John Major between 1992 and 1994. He was instrumental in drawing public attention to the dangers of AIDS in Britain. He is the author of A Political Suicide: The Conservatives’ Voyage into the Wilderness and is currently writing a book on the global AIDS epidemic. Hosted by Alliance India, Lord Fowler recently visited New Delhi and Surat, Gujarat, to learn more about how this country has risen to the challenge of HIV.

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Realising ART Adherence among People Who Inject Drugs in India

Hridaya educates PWID living with HIV about positive prevention, emphasizing the importance of adhering to ART treatment regimens. (Photo by Prashant Panjiar for India HIV/AIDS Alliance)

Hridaya educates PWID living with HIV about positive prevention, emphasizing the importance of adhering to ART treatment regimens. (Photo by Prashant Panjiar for India HIV/AIDS Alliance)

Adherence to antiretroviral therapy (ART) is strongly correlated with HIV viral suppression, reduced rates of resistance, an increase in survival, and improved quality of life. Yet there are numerous cases in India of people living with HIV who exist in co-morbid conditions: dependent on substances but dropping their ART regime due to societal stigma and discrimination or to a lack of understanding about the need to adhere to treatment.

Lamyanba (name changed) from Imphal has been injecting drugs since 1989. When he tested positive for HIV recently, he had a dangerously low CD4 count of 19 and was immediately put on ART. He responded favourably to treatment, and his CD4 count increased to 600 in a span of six months. When his health improved, he decided to stop the treatment without consulting a doctor or service provider. Lamyanba’s decision is unfortunately too common.

Recognizing that people who inject drugs (PWID) living with HIV frequently drop out from ART treatment, the Hridaya programme is undertaking active monitoring to address this problem. A tracking tool has been developed to monitor a client’s routine diagnostics. The tool indicates the dates for ART follow-ups, and an outreach worker contacts clients to remind them of their follow-up appointments. Outreach workers also keep a check on client CD4 counts.

Supported by Government of Netherlands, Hridaya works in the states of Bihar, Haryana, Uttarakhand, Jammu and Manipur to strengthen harm reduction interventions at state and district levels. Aiming to cover all PWID in these states, the programme focuses on the unmet harm reduction needs of vulnerable drug-using populations and complements HIV prevention activities in each state under India’s National AIDS Control Programme.

Hridaya routinely educates PWID living with HIV about positive prevention focusing on the value of adhering to ART treatment. The programme team works with clients to identify barriers to accessing ART treatment and advises on the need for strict adherence to the treatment regime. In Imphal, Hridaya aims to keep 95 percent of clients on treatment and minimize loss-to-follow-up. With this support, Lamyanba is back on ART, leading a healthy positive life.

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The author of this blog, Roshan Ningthoujam, is programme manager for Hridaya at Social Awareness Service Organisation (SASO) in Manipur, India.

Spanning five countries (India, China, Indonesia, Kenya, and Malaysia), Community Action on Harm Reduction (CAHR) expands harm reduction services to more than 180,000 people who inject drugs (PWID), their partners and children. The programme protects and promotes the rights of these groups by fostering an enabling environment for HIV and harm reduction programming in these five countries. CAHR is supported by the Ministry of Foreign Affairs, Government of Netherlands

In India, CAHR is called ‘Hridaya’ and is implemented by India HIV/AIDS Alliance in partnership with SASO, Sharan and a number of community-based harm reduction organisations and networks. This programme helps build the capacity of service providers, makes harm reduction programmes more gender-responsive, improves access to services and advocates for the rights of PWIDs. In addition to providing services, Hridaya has a strong capacity building component to support advocacy, knowledge management and improved services for PWIDs.

Wrapping Up ICAAP11 (November 22, 2013, Bangkok, Thailand)

Today concludes the 11th International Congress on AIDS in Asia and the Pacific (ICAAP 11) in Bangkok, Thailand. Alliance India is wrapping up our participation in the meeting with two sessions focused on the sexual and reproductive health (SRH) of people living with HIV (PLHIV) and a closing press conference on building the capacity of MSM and transgender organisations to partner with government to improve HIV prevention. Don’t miss this last opportunity: please join us!

Skills Building Workshop:

  • Beyond My Infection: A workshop to build capacities of PLHIV and Key Populations as advocates on Sexual and Reproductive Health and Rights (SRHR)

        Friday, November 22, 10:00am-1:00pm, Hall O, QSNCC

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Poster Discussion:

  • Cervical Cancer Awareness in Women Living with HIV: Findings from the Koshish Baseline in India

        Friday, November 22, 12:45-1:45pm, Plaza, QSNCC

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Press Conference:

  • Building capacity of MSM & TG CBOs to partner with Government HIV prevention interventions in India

        Friday, November 22, 2-3pm, Press Conference Room, QSNCC

Please download our roadmap of sessions at ICAAP that include Alliance India team members or discussions of our work. It includes a full list of our 31 posters describing our responses to a range of key priorities in India’s epidemic. Please also visit our Community Booth (#C3) to learn more about our work.

Five Priorities: Alliance India at ICAAP (November 20, 2013, Bangkok, Thailand)

India HIV/AIDS Alliance puts particular emphasis on five priority populations: men who have sex with men: transgenders & hijras; sex workers; people who inject drugs; and people living with HIV. Today at the 11th International Congress on AIDS in Asia and the Pacific (ICAAP 11) in Bangkok, Thailand, we have five sessions that showcase some of our work with key populations. If you are attending, please join us.

Skills Building Workshops:

Me and My Partner’ – A Community-Based Skill Building Training on Positive Prevention for Key Populations

Nov. 20, 1:15-4:15pm, Hall P

Workshop1Equal Access/Equal Rights: Empowering Transgender Communities through Advocacy, Mobilization, and Capacity Building under the Pehchan Program

Nov. 20, 4:15-7:15 pm, Hall K

Workshop2Oral Presentations:

  • Reaching the Hard-to-Reach: Engagement & Facilitation as Research Strategies with Sexual Minorities: Nov. 20, 3:45-5:15pm, Hall H
  • Building Capacity of MSM & TG CBOs to Partner with Government HIV Prevention Interventions in India: Nov. 20, 3:45-5:15pm, Hall H

Press Conference:

  • Engagement & Facilitation as Research Strategies with Sexual Minorities: Nov. 20, 2-3pm, Press Conference Room

Please download our roadmap of sessions at ICAAP that include Alliance India team members or discussions of our work. It includes a full list of our 31 posters describing our responses to a range of key priorities in India’s epidemic. Please also visit our Community Booth (#C3) to learn more about our work.

“11 for ICAAP 11”: A Selection of Alliance India Posters at ICAAP (November 17-22, 2013, Bangkok, Thailand)

Alliance India is presenting a total of 31 posters at the 11th International Congress on AIDS in Asia and the Pacific (ICAAP 11) in Bangkok, Thailand, 17-22 November 2013. To mark the 11th ICAAP, below are a selection of 11 of our posters displayed in Bangkok that detail our work supporting community-based programming for people living with HIV (PLHIV), men who have sex with men (MSM), transgenders, hijras, sex workers and people who inject drugs (PWID), all key priorities to addressing India’s complex epidemic.

Paving the Pathway: PLHIV community consultations enhance national care and support programme in India

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Factors Influencing SRH Service Uptake by PLHIV: Findings from the Koshish baseline study in India  

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An Emergent Crisis: Addressing the Hepatitis C Epidemic in People Who Inject Drugs (PWID) in India

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By the Community, For the Community: Involving PWID in Assessment of Drug-using Patterns Assessments

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Identifying Access Barriers for Transgenders Seeking Gender Transition Services in India

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Community-led Advocacy to Address SRH Needs of PLHIV: Experience from the Koshish programme in India

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Service without a Smile: Pehchan study of the friendliness of HIV services to sexual minorities in India

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Positive Rights and Sexual Health: A review of SRH laws and policies for PLHIV in India

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Tracking Organisational Development of Sexual Minority CBOs in India Using Pehchan’s ‘CBO CyclePoster_Page_10

Power in Our Hands: Increasing involvement by sexual minorities in HIV programme oversight in India 

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Promoting Entrepreneurship among Sex Workers to Reduce HIV Vulnerability in Andhra Pradesh

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Alliance India at ICAAP 11 (November 17-22, 2013, Bangkok, Thailand)

Blog2India HIV/AIDS Alliance is excited to be part of ICAAP 11. You are warmly invited to attend our sessions and learn more about our work in India to improve the AIDS response for communities most affected by the epidemic, including MSM, transgenders and hijras; female sex workers; people who inject drugs, and PLHV from all demographics.

Alliance India staff, board members and representatives from our partner organisations will participate in a range of sessions including pre-conference meetings, skills building workshops, oral presentations, poster exhibits and press conferences.

Please download our roadmap of sessions at ICAAP that include Alliance India team members or discussions of our work. It includes a full list of our 31 posters describing our responses to a range of key priorities in India’s epidemic. Please also visit our Community Booth (#C3) to learn more about our work.

The conference takes place at the Queen Sirikit National Convention Centre (QSNCC) from November 17-22 in Bangkok, Thailand.

APCOM Pre-Conference on MSM and Transgender Issues in Asia and the Pacific

– FOREPLAY: The Final Push Toward the Three Zeroes: Nov. 17, 8.30am–5.30pm, QSNCC

Community Forum

 – Nov. 18, 8.30am–5.00pm, QSNCC

Community Booth & Marketplace

 – Alliance India Community Booth (#C3): Nov. 19: 4-7pm; Nov. 20-21: 9 am-9pm; Nov. 22: 9am-3pm. Zone CG

Oral Presentations

– Reaching the Hard-to-Reach: Engagement & Facilitation as Research Strategies with Sexual Minorities: Nov. 20, 3:45-5:15pm, Hall H

– Building Capacity of MSM & TG CBOs to Partner with Government HIV Prevention Interventions in India: Nov. 20, 3:45-5:15pm, Hall H

Poster Discussion

 – Cervical Cancer Awareness in Women Living with HIV: Findings from the Koshish Baseline in India: Nov. 22, 12:45-1:45pm, Plaza

Skills Building Workshops

– Me and My Partner’ – A Community-Based Skill Building Training on Positive Prevention for Key Populations: Nov. 20, 1:15-4:15pm, Hall P

– Equal Access/Equal Rights: Empowering transgender communities through advocacy, mobilization, and capacity building under the Pehchan program: Nov. 20, 4:15-7:15 pm, Hall K

– Strengthening Community Systems for MSM, Transgender and Hijra Populations in India: The Pehchan Training Curriculum in Action: Nov. 21, 4:15-7:15pm, Hall O

– Beyond My Infection: A workshop to build capacities of PLHIV and Key Populations as advocates on Sexual and Reproductive Health and Rights (SRHR): Nov. 22, 10am-1pm, Hall O

 Press Conferences

 – Engagement & Facilitation as Research Strategies with Sexual Minorities: Nov. 20, 2-3pm, Press Conference Room

– Building capacity of MSM & TG CBOs to partner with Government HIV prevention interventions in India: Nov. 22, 2-3pm, Press Conference Room

We’ll update Facebook, Twitter and our blog every day with details of our activities, including documents to view online or download. We look forward to connecting with you at ICAAP in Bangkok!

If you have any questions, please contact us at info@allianceindia.org. For more information, please visit:

Facebook: https://www.facebook.com/indiahivaidsalliance

Twitter: https://twitter.com/AllianceinIndia

Blog: https://indiahivaidsalliance.wordpress.com/

Website: http://www.allianceindia.org/