Stigma, HIV and Sexual Health in India: A Peer Educator's Perspective

The Government of India estimates that about 2.40 million Indians are living with HIV, with children (<15) accounting for 3.5% of all infections. In addition, 39% of the total number of people living with HIV are women. As such, stigma and discrimination towards those living with HIV is widespread. 

Nevertheless, there are numerous organizations that are working tirelessly to combat the general lack of information about HIV, as well as the rampant stigma that is associated with it. One such organization is The YP Foundation, who through their Know Your Body, Know Your Rights (KYBKYR) division is seeking to dispel myths and misunderstandings about HIV and sexual health among young people in India. 

What follows is an interview on stigma, HIV and sexual health in India with Sukhmani Kaur, Peer Educator at the Know Your Body, Know Your Rights division of The YP Foundation. In her time as a Peer Educator, Sukhmani has held workshops on comprehensive sexual health & reproductive rights, and HIV/AIDS with over a 100 girls and young women across India.  

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SAN: How does the Know Your Body, Know Your Rights program of The YP Foundation seek to address issues of stigma and discrimination among young people in India?

Sukhmani: The Know Your Body, Know Your Rights branch of The YP Foundation is a youth-led program which provides young people with an opportunity to enhance their knowledge and skills in the fields of health, gender, education, sexuality and human rights. It enables them to create, strengthen and promote new policies and programs by building leadership, with a special focus on peer education.

The peer educators are trained thoroughly on sexuality education and motivated to broaden their perspectives by addressing the various issues of stigma and discrimination at the national and international level. They are encouraged to think about the various possible solutions to the problems that dominate the sphere of sexuality, gender and health. The role of the peer educator extends to spreading awareness and imparting knowledge among other young people about stigma, and to also shed light on the common issues of discrimination with a set of coping strategies, through various workshops and advocacy programs.

SAN: What role do you think the persistence of stigma plays in the continuing prevalence of HIV and AIDS in India?

Sukhmani: The stigma attached to HIV and AIDS exists in a variety of ways, including shunning, discrimination and avoidance of those living with HIV. Stigma-related violence can prevent many people from seeking HIV testing, which could ultimately perpetuate the spread of HIV. Many people fear the absence of confidentiality and are consequently unable to disclose their HIV status.

Fear of rejection and violence also prevents people from seeing a doctor and seeking a secured treatment. Also, the widespread perceived association of AIDS with homosexuality, prostitution and drug abuse, which are already stigmatized in Indian society, has generated intense fear and resentment among the population at large. At a policy level, the stigma associated with HIV can deter the government from taking fast, effective action against HIV and AIDS. Thus, stigma is an important barrier to public action, making AIDS the silent killer. 

SAN: Do you think there is a strong correlation between the absence of testing services, lack of general information and the existence of taboos and stigma?

Sukhmani: Yes, undoubtedly there is a strong correlation between the absence of testing services, lack of general information and the existence of stigma and taboos. In health care settings, people living with HIV can experience stigma and discrimination such as being refused medicines or access to health facilities, receiving HIV testing without consent, and a lack of confidentiality. Many people do not get to choose to who, when and how to disclose their HIV status.

In the workplace, people living with HIV may suffer stigma from their co-workers, in the form of social isolation, or discriminatory practices such as termination of employment. Fear of an employer's reaction can also cause anxiety to a person living with HIV.

Despite the best efforts of civil society organizations, in India a large proportion of the population is still unaware of the distinction between HIV and AIDS, where the two terms are used as synonyms. This can arguably be one of the major causes for the generation of various myths surrounding HIV and AIDS. Also, a considerable number of people do not have adequate access to clean and secure health facilities, condoms and ART therapies. Because of the lack of general information, many are not aware of the modes of transmission and prevention, and therefore associate irrelevant actions, such as holding hands, kissing and hugging to HIV transmission.

SAN: How do you view the efforts of the government of India with regard to addressing issues of stigma and Discrimination?

Sukhmani: HIV and AIDS are major causes of concern for the Government of India. The government's major AIDS control initiative is the National AIDS Control Program and the premiere AIDS agency is the National AIDS Control Organization (NACO). The organization attempts to provide a dignified support to all the people living with HIV, as well as access to quality health care.

With sustained effort, the government has been successful in reducing HIV transmission through blood transfusion by ensuring the availability and safety of blood in blood banks. Mother to child transmission of HIV has also been reduced considerably by providing access to various testing services and experienced counseling. With the effective use of media, the government has also attempted to impart knowledge about the various modes of transmission and prevention. Condoms have also been made cheaper and easily available in some areas, which has also helped in the reduction of other sexually transmitted diseases.

However, to reduce the stigma and discrimination that surrounds HIV and AIDS, the government needs to redirect its focus on comprehensive sexuality education. All adolescents and adults should have access to sex education. People should also be provided detailed information about the various modes of transmission of HIV, and ways to prevent it, so as to dispel myths that surround HIV and AIDS. The stigma around the use of condoms should be eliminated for its effective usage. Also, it is imperative to completely eliminate stigma related violence in workplaces and health care centers. By improving the implementation of the policies undertaken by the various centers at the state level, the government could also make the access to testing services and medicinal drugs affordable and convenient.

SAN: In your work, have you seen a reduction in the stigma associated with HIV, especially among young people?

Sukhmani: The Know Your Body Know Your Rights Program of The YP Foundation creates and advances platforms for young people to advocate with decision makers for Comprehensive Sexuality Education. With a special focus on the rights-based approach, the program has been successful in reducing stigma associated with HIV and AIDS in the locations that it has worked in. In addition to providing detailed and accurate information about HIV, KYBKYR also attempts to eliminate the myths and misconceptions surrounding it. Other key objectives include sensitizing people about all forms of violence and discrimination, increasing access to quality health care, educating the youth and inculcating value education and clarification.

KYBKYR has also been successful in strengthening youth led initiatives and movements and advancing young people's human rights by building leadership. Various taboos and issues of discrimination are carefully addressed with accurate coping methods and strategies. Realizing the importance of educating people about HIV and AIDS, more and more young people have been targeted for spreading awareness about its causes, prevention and treatment. Also, it is important to realize that AIDS is not 'someone else's problem'. It is an issue that everyone should fight for, so as to completely eliminate all the myths and misconceptions and treat those living with HIV with dignity and respect. 

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To learn more about the Know Your Body, Know Your Rights Campaign check out their facebook page and their website. 

To learn more about The YP Foundation visit their facebook page and their website

A Timeline for National HIV Testing Day

Happy National HIV Testing Day #stigmawarriors! Today we decided to present a timeline to show how far testing of HIV and AIDS has come in the United States, especially since there is a renewed effort by the LGBT community, HIV community, and the medical community to remove the stigma surrounding getting tested! 

The history of HIV testing is almost as old as the history of HIV in the United States, and since the 1980s the types of tests and how they detect HIV have changed so much. Let's take a look at how far HIV testing has come!

1980-1984:

• The City and County of San Francisco, working with the Shanti Project and the San Francisco AIDS Foundation, set up the San Francisco Model of Care in 1982, emphasizing home and community testing, care and treatment services [1]. 
• The following year, in May 1983, Congress passed the first bill that included funding specifically targeted at AIDS research, which lead to developments in testing and treatment [2].

1985-1989:

Between 1985, there was a lot of developments when it came to HIV testing! 

• The FDA licensed ELISA, the first commercial blood test which tested for HIV antibodies in the blood. Blood banks immediately began testing the US blood supply [3]. 
• Unfortunately, the Pentagon announced in the summer of 1985 that the military would immediately begin testing all new recruits for HIV infections, with the intention to reject anyone who tested positive. This policy sadly continues today [4]. 
• On December 6, 1985, the US Public Health Services issued the first recommendations for the prevention of mother-to-child transmission [5].
• In April 1987, the FDA approved the Western Blot Blood Test Kit, a more specific test for HIV antibodies [6]. 
• On August 14, 1987, the CDC issued the Perspectives in Disease Prevention and Health Promotion Public SafetyGuidelines for Counseling and Antibody Testing to Prevent HIV Infection and AIDS [7].
• On August 18, 1987, the FDA sanctioned the first human tests of a candidate vaccine to prevent HIV [8]. 
• At the end of 1987, the FDA published regulations which required all blood and plasma collected in the US to be screened for HIV [9].
• IN 1988, the FDA doubled its efforts to test the US blood and plasma supply, and by the end of the year 100% of the US blood supply had been tested for HIV antibodies [10]. 
• More importantly, the first World AIDS Day took place on December 1, 1988 [11].
• In 1989, the FDA licensed the first diagnostic kit to test for HIV antigens. Prior to this all HIV tests had only tested for antibodies [12].

1990-1994:

• The early 1990s brought more new HIV tests and health regulations to the public. The first HIV test to test for both HIV-1 and HIV-2 antibodies was licensed in 1990 [13], and that same year the CDC adopted the HIV-prevention counseling model, a “client-centered” approach that focuses on the patient rather than the disease [14]. 
• On May 27, 1992, the FDA licensed a 10-minute diagnostic test kit which can be used by health professionals to detect the presence of HIV-1 [15]. 
• The following year, the FDA published an interim rule on December 14th establishing a requirement for certain infectious disease testing, donor screening, and record keeping to help prevent the transmission of HIV and Hepatitis B and C through human tissue used in transplantation [16]. 
• Later that month, on December 23rd, the FDA approved the first non-blood based collection kit utilizing oral fluid for use in the detection of the antibody to HIV-1 [17].

1995-1999:

• The National Association of People Living with AIDS launched the first National HIV Testing Day on June 27, 1995 [18]. 
• That same year, the FDA recommended that blood establishments should implement donor screening for HIV-1 antigen using licensed test kits [19].
• 1996 brought some of the biggest and quickest advancement in HIV testing to date. Within four months the FDA approved the first at-home testing and collection kit, a viral load test, and the first HIV urine test [20]. 
• In 1998, the FDA approved Cambridge Biotech HIV-1, a HIV-1 (Western Blot) test with a new indication for urine specimen testing [21].

2000-2004:

• The first National HIV Vaccine Awareness Day was observed in 2001, and the CDC announced an HIV Prevention Strategic Plan to cut annual HIV infections in the US by half within five years that same year [22]. 
• The following year, 2002, marked an important development in HIV testing. On November 7, the FDA approved the first rapid HIV diagnostic test kit for use in the United States that provides results with 99.6% accuracy in as little as 20 minutes. Unlike other antibody tests for HIV, this blood test can be stored at room temperature, requires no specialized equipment, and may be used outside of traditional laboratory or clinical settings, allowing more widespread use of HIV testing [23].
• HIV testing became even more widespread on February 3, 2003, when the Department of Health and Human Services expanded availability of the rapid HIV test from the current 38,000 laboratories to more than 100,000 sites, including physician offices and HIV counseling centers [24]. 
• In 2004, the first rapid oral fluid test and the first rapid-body test for plasma which detects HIV-1 and HIV-2 were approved by the CDC [25].

2005-2009:

• The CDC officially recommended routine HIV screenings in US health care settings for people aged 13-64, and yearly screening for populations considered to be "at-risk" in 2006. 
• The WHO and UNAIDS updated their global guidelines in 2007 to include that same recommendation [26]. 
• On December 30, 2008, the FDA approved the first nucleic acid test to detect the presence of two less common types of HIV, HIV-2 and HIV-1 Group O, in donated blood plasma and human tissue [27]. 
• The following year, in 2009, the FDA, CDC, and other federal agencies promoted National HIV Testing Day to increase awareness of the importance of HIV testing to help improve the health of those at risk for getting HIV and to prevent future infections [28]. 

2010-2014:

• In 2010, the CDC approved the first test which detects HIV antigens and antibodies [29]. 
• The first rapid oral fluid home test, Oraquick, was approved by the CDC in 2012 [30]. 
• And in 2013, the CDC approved the first rapid test that detects HIV antigens and antibodies, and distinguishes between acute and established HIV-1 infections [31]. 

What a trip! I learned so much about the history of HIV testing that I never knew before! I hope you did too! 

It shows just how far HIV testing really has come from the early days. With new testing technology people can even test inside the comfort of their own homes. Now the next step is removing the stigma surrounding HIV testing, which several public campaigns are striving to do. But the campaigns won't be successful without you, #stigmawarriors! Let's get out there today and every other day to reduce the stigma surrounding HIV testing, through our words and actions. That way, more people will feel encouraged and supported in taking charge of their health!

We hope National HIV Testing Day inspires you to get out there and be the best #stigmawarrior you can be!

The Hidden Epidemic: HIV/AIDS in Eastern Europe and Central Asia, Part 1

When HIV is discussed at the international level, let’s face it, most people think of Africa and Southeast Asia as the regions where HIV is spreading most rapidly. That is where most media, celebrity, and NGO attention is focused with regards to prevention and education. However, HIV/AIDS is spreading most rapidly in Eastern Europe and Central Asia [1]

To put this in context: between 2001 and 2011, the prevalence of HIV in Eastern Europe and Central Asia increased by 250%; during that same time period, prevalence fell by 0.8% in Africa and stabilized at 0.3% in Southeast Asia [2].  Yet despite this reality, the spread of HIV in this region receives little to no media coverage both domestically or internationally.

Due to the limited awareness and coverage on this, the SAN will be showcasing a blog series discussing the effects of stigma in Central and Eastern Europe, and what the world can do to make this problem better known. This first part of the series will serve to give you, our #StigmaWarriors, some background on the stats, policies, and social environment of Eastern Europe and Central Asia.

Knowing the Numbers

Approximately 1.4 million people (1% of the population) in Eastern Europe and Central Asia are living with HIV [3]. However, this is an estimate based on the current number of people who have been officially diagnosed with HIV. In reality the number may actually be higher due to underreporting, a direct result of stigma and discrimination people may experience around HIV testing and disclosure.

The countries with the largest populations of people living with HIV are Estonia, Russia, and Ukraine. Currently, Russia and Ukraine account for 90% of new cases each year in this region [4]. Below we have included a table of the HIV prevalence among adults in each country in this region.

HIV Prevalence in Eastern Europe and Central Asia:

Country	# of adults living with HIV	Prevalence
Estonia	9,900	1.3%
Russia	980,000	1.1%
Ukraine	350,000	0.8%
Latvia	10,000	0.7%
Belarus	13,000	0.4%
Kyrgyzstan	4,200	0.4%
Romania	15,000	0.3%
Tajikistan	10,000	0.3%
Armenia	3,500	0.2%
Georgia	2,700	0.2%
Kazakhstan	12,000	0.2%
Azerbaijan	7,800	0.1%
Bulgaria	3,800	0.1%
Hungary	3,300	0.1%
Lithuania	2,200	0.1%
Poland	20,000	0.1%
Turkmenistan	200	0.1%
Uzbekistan	16,000	0.1%

Source: [5]

In Eastern Europe and Central Asia, HIV/AIDS is currently concentrated, but not limited, among drug users and sex workers and their partners. Other populations affected are prisoners, MSM, and children who have parents living with HIV, but their numbers are small compared to the number of sex workers and drug users affected. 

Among drug users, approximately 20% are living with HIV, though the number could be even higher [6]. Furthermore one-quarter of the world’s injecting drug users live in Eastern Europe and Central Asia, and approximately 80% of new HIV cases are transmitted via injecting drug use [7]!  Among sex workers, 11% of this population are living with HIV [8].  It is even higher for sex workers who inject drugs; 43% for Ukrainian sex workers who inject drugs, compared to 8.5% for those who do not [9]. Lack of knowledge about the spread of HIV is a leading cause of high HIV prevalence among these groups. Only 8% of sex workers in Georgia know how HIV is spread, compared to 29% in Moldova and 36% in Uzbekistan [10]. It is also believed that the spread of HIV has been allowed to escalate due to very little funds targeting drug users, sex workers, and MSM, This is confirmed by UNAIDS Regional Program Adviser Roman Gailevich, who stated: "Governments everywhere are reluctant to spend money on sex workers, on drug users, but MSM comes at the top of the reluctance list. It is probably the last programs that the governments will start." [11]

Policy and Social Issues

Given the aforementioned statistics, it should come as no surprise that currently in Eastern Europe and Central Asia, HIV/AIDS is met with secrecy and derision , and HIV-related stigmas discourage testing and treatment – even at the policy level. Let consider the policies in Russia, for example. The Russian government does not allow harm reduction policies, such as needle-sharing programs because they claim it would threaten drug prevention programs by encouraging people to use injectable drugs [12]. Additionally, HIV treatment centers are separated from the rest of the medical community [13]. This is particularly troubling, not only because it inhibits individuals from receiving treatment, but as a result of the new gay propaganda laws, the threat of violence, social alienation, and arrest this has amplified individual’s concerns of being seen entering a HIV clinic and being perceived as gay.

These policies inform people’s perspectives on HIV and fuel stigma. Stigma is so prevalent that many of those who know their HIV status state that they do not fear dying as much as they fear the stigma associated with HIV [14]. The ugly reality for people living with HIV in this region, though it is applicable in other settings, is that they are more likely to be discriminated against when looking for employment, and there is a lack of confidential legal avenues for people living with HIV could to use to prevent such discrimination. As one man living with HIV in Georgia said:

"I know beforehand my status will certainly hinder the chance to get job or to be promoted… I do not search for a job as I think they will have a negative attitude towards me." [15]

Not even children are protected from HIV stigma. About 75% of parents of schoolchildren stated they would remove their child from school if they found out there was a child living with HIV attending the school [16], and one schoolteacher remarked:

 “Yes they [people living with HIV] are really dangerous. I think that such children [living with HIV] should not attend neither schools nor kindergarten as the other children will be safe”. [17]

Consequently, many children are forced to hide their status, until they are out-ed vis-à-vis a stamp on their national IDs that all people living with HIV are forced to carry [18].

This leads to much internalized shame and stigma, and explains why HIV is growing so rapidly in-country.

Until Next Time…

It is clear that there is a long way to go before the stigma facing people living with HIV in Eastern Europe and Central Asia is gone. The quality of life for those living with HIV is highly unstable, due to stigma and poor quality of medical care. This is a setback to the prevention of HIV, and to the quality of life for such individuals.

• What do you think about this issue?
• Why do you think HIV/AIDS in Eastern Europe/Central Asia hasn't been discussed much in the media?
• What do you think can be done to bring more attention to this?

Be sure to look out for our next post, where we will be discussing inter-country programs, and the various successes and failures of individual countries in implementing HIV prevention, treatment, and anti-stigma programs.

Breaking Down Barriers: Addressing HIV Stigma in Health Care Settings by Betrand Audoin, Executive Director of the IAS

Bertrand Audoin is the Executive Director of the International AIDS Society (IAS) and a member of the Stigma Action Network's Steering Committee. He has been working in the HIV field for almost 20 years, and first became involved in the response to the epidemic at grass roots level in the early 1990s. For more information about Bertrand read his full IAS bio here.

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Given that the International Congress on AIDS in Asia and the Pacific (ICAAP11) – in Bangkok is soon upon us I’d like to do a follow up to the New York Times opinion piece I wrote a few months ago on the impact of homophobic laws and discrimination following the recent murders of a transgender youth and a gay man. 

The issues of stigma and discrimination can also be deeply felt in health care settings too. People are more likely to use health services if they are confident that they will not face discrimination; that their use of services will not expose them to other risks, such as detention due to their criminalized status; that their confidentiality will be maintained; that they will have access to information; and that they will not be coerced into accepting services without consent. 

Many reports reveal the real existence of the discrimination that many people living with HIV/AIDS experience in health-care systems, including  differential treatment; the denial of treatment; HIV testing without consent;  breaches of confidentiality and  refusal of treatment – refusal to provide medical services to people living with HIV.

Women living with HIV/AIDS experience double discrimination in health-care settings. Reports indicate that pregnant women are routinely tested for HIV without their knowledge, much less informed consent to the procedure.

In India, spouses of all HIV-positive men are advised, and sometimes forced, to undergo HIV testing whether seeking medical care or not. HIV testing is also administered as a rule to all patients prior to surgery and in cases where a suspicion of HIV arises based on their physical appearance or belonging to a high-risk group, such as sex workers. Generally, such testing is mandatory, no consent is provided and there is no pre- or post-test counseling.

It is truly unacceptable that reports are still revealing that 29% of persons living with HIV/AIDS in India, 38% in Indonesia and over 40% in Thailand say that their HIV-positive status had been revealed to someone else without their consent.

This stigma and discrimination towards people with HIV can lead to a vicious cycle with well documented negative health implications ranging from increased depressive symptoms to engaging in risky sexual behaviour.

We’ve long known that there are three main causes of HIV-related stigma in health facilities: a lack of awareness among health workers of what stigma looks like and why it is damaging; fear of casual contact stemming from incomplete knowledge about HIV transmission; and the association of HIV with improper or immoral behaviour.

At the IAS we strongly believe that HIV professionals, whatever their level and field of engagement and action, can play a pivotal role in breaking down barriers and contributing to achieving universal access through a human rights framework. They are a key entry point for promoting and implementing change and preventing situations of abuse and dysfunction in a wide range of settings

The IAS has a two pronged approach to its work with HIV professionals:  ensuring that health care providers and HIV professionals are aware of their own human rights AND enabling HIV professionals to realize rights based approaches and attitudes in all work they undertake both in and outside of provide health care settings.

The IAS also aims to equip HIV professionals with the skills and tools necessary to ensure patients’ rights to informed consent, confidentiality, treatment and non-discrimination and  to also build their ‘legal literacy’ by improving their knowledge of human rights and the national and local laws relevant to HIV.

I am convinced that building both the knowledge and capacity of HIV professionals will empower them to become agents of change and enable them to provide the highest available standard of care to people living with, affected by and at higher risk of becoming infected with HIV.

I look forward to my colleagues at the Stigma Action Network reporting back on their own workshop at ICAAP 11 as well as their impressions of the more generalized discussions around the issue at the conference.