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

The SAN Back-to-School Reading List: 6 Books You Should Read to the Children in Your Life

Talking to children about sexual health and HIV may not always be the easiest. However it is vitally important for parents and teachers to gradually broach these subjects. This is important not just to reduce HIV prevalence down the line, but perhaps more importantly, to mitigate the stigma and discrimination associated with it. 

One of the best ways to impart such knowledge in a lighthearted way is during story time. We recently found Bill and Melinda Gates’ Reading List with books that help children to think globally and be inspired to effect change. In the same vein, we have created a SAN Back-to-School Reading List with books that help children begin to understand the subject of HIV and AIDS, as well as how to support those living with or who have family living with HIV.

Here is our list of 6 books that should help you to get talking about HIV with the kids in your life: 

1. My Dad Has HIV by Earl Alexander

"My Dad Has HIV is a children's book told from the point of view of Lyndsey, a 7-year-old girl in the second grade. Lyndsey is based on Earl Alexander's own daughter Lyndsey. With an easy-to-read style and fun illustrations, this book is a great way to really educate children about the real nature of HIV/AIDS." [1]

This book was written by Earl Alexander, a father living with HIV, for his daughter Lyndsey, and "all children whose lives have been touched by AIDS." [1] Alexander initially struggled "to accept his condition" but ultimately "he resolved to devote himself to educating everyone, especially the youth, about the dangers of sex, drugs, alcohol, and disease." [1] 

2. Alex, the Kid with HIV by Linda Walvoord Girard

"When a new boy who has AIDS joins Michael's fourth-grade class, Michael reluctantly becomes his work partner. He soon learns, however, that Alex is funny, creative, and mischievous. He says he can do anything he wants because "I'm sick," so the two boys write an insulting poem about their teacher. Alex's wish to be treated like everyone else is granted--both boys are disciplined, but their friendship is strengthened." [2]

3. I am HIV-Positive by Wendy Flanagan

"The story looks at the basic facts of HIV/AIDS through the eyes of a child. It explains in the simplest terms transmission, infection and the do's and don't's of prevention. It looks at practical ways of caring and coping. Young adults are more vulnerable to HIV/AIDS than anyone else. Lindiwe's explanation should empower learners to lower the risk of getting sick and increase their resilience to the virus. This is one of the JAWS HIV/AIDS readers developed for primary school learners.The story conveys both the basic information about HIV/AIDS (health promotion) and the subtle psycho-social dimensions of the pandemic affecting learners' lives (personal and social developement). It can be used as a reader, or to help teachers introduce subject matter that is difficult to manage in the classroom." [3]

4. Little Feet, Big Steps by Brit Sharon

"Little Feet, Big Steps is a coming of age story about a young girl that, with the help of her encouraging mother, takes on a huge project by signing up for the AIDS Walk in her city. She turns to her community to fundraise and is completely unstoppable on her journey to make a difference. Throughout the story, Gabby comes to terms with what AIDS is and why people come together to support causes that effect others. This story steps away from traditional storyline of a helpless female character waiting to be rescued by prince charming, and instead, empowers young people to take action in their communities, causing them to be leaders on the planet." [4]

5. Medikidz Explain HIV (Superheroes on a Medical Mission) by  Kim Chilman-blair

Understanding the impact of HIV on children worldwide "Dr. Kim Chilman-Blair and Dr. Kate Hersov teamed up with a leading graphic novel artist to create a series of comic books explaining health conditions to young people from a medical viewpoint. Each comic is written by doctors and peer-reviewed by leading specialists in each respective therapy area. Medikidz is a resource designed to educate not only young patients, peers and their parents, but also to aid practitioners and educators in explaining health conditions as effectively as possible. The books follow a team of five larger than life superheroes from outer space, with each Medikidz specialising in explaining a different part of the body. What's Up with Jason? is an engaging way to educate children about the medical facts behind HIV and how it can be prevented." [5]

6. Be a Friend: Children Who Live with HIV Speak by Lori ed Weiner

"In these writings and drawings, children with HIV infection and AIDS who have come to the National Cancer Institute in Bethesda, Maryland, tell how it feels to be different from other kids, how they face rejection if people learn they are sick, and what it is like to lose friends and loved ones to AIDS. Simple and powerful, the writings and drawings express all the youngsters' hopes and fears." [6]

See one you want to read to the child or children in your life? 

We think this is a great collection of books on HIV and AIDS which discuss the subject from diverse angles in a way that would help a child understand this condition, as well as how to be supportive and non-discriminatory toward people living with HIV or AIDS. 

Here's to a generation free of HIV stigma! Let's all contribute to its making!

Will HIV Ever Be Safe Enough for You?

This post originally appeared on Mark S. King's Blog.

There is a classic episode of Oprah from 1987 that can still raise my blood pressure. That year, the tiny town of Williamson, West Virginia, became part of a national discussion about AIDS when Mike Sisco, who had returned to his home town to die of the disease, dared to step into a public pool.

The community freakout was immediate. Sisco was quickly labeled a psychopath (rumors emerged accusing him of spitting into food at the grocery store), and the town pool was closed the next day to begin a Silkwood-style pressurized cleaning.

Soon thereafter, Oprah Winfrey arrived with cameras for a town hall forum about the incident.  Fear was the order of the day. “If there’s just one chance in a million that somebody could catch that virus from a swimming pool,” the town’s mayor told Winfrey’s worldwide audience, “I think I did the right thing.”

Sure. Why not react in the most extreme way possible, if there is a chance in a million?

Williamson citizens were not swayed by health officials who calmly explained the established routes of HIV transmission and the impossibility of infection from a pool. “The doctors can say you can’t get it this way,” a woman countered, “but what if they come back someday and say, ‘We were wrong?’”

Indeed. What if? If there’s a chance in a million…?

That broadcast might have remained a sad footnote in HIV/AIDS history, an instructive example of people ignoring scientific fact to protect a satisfying fear, if history didn’t enjoy repeating itself so much. Today, though, the willful ignorance isn’t coming from uneducated residents of a southern town you can barely find on a map.

It’s coming from gay men. And they are just as threatened, frightened, and dismissive of science as the townsfolk of Williamson were thirty years ago.

Recently, research known as The PARTNER Study was presented at the prestigious Conference on Retroviruses and Opportunistic Infections (CROI). PARTNER proved something HIV advocates have long suspected: people with HIV with an undetectable viral load are not transmitting the virus to their partners. The study included nearly 800 couples, all involved in an HIV positive/negative relationship, gay and straight, with the positive partner maintaining an undetectable viral load. Over the course of two years, more than 30,000 sex acts were reported and documented (couples were chosen based on their tendency to have sex without condoms).

Not a single HIV transmission occurred during the study from someone with an undetectable viral load. If PARTNER had been researching a new medication, they would have stopped the trial and dispensed the drug immediately.

The PARTNER results bolster the prevention strategy known as “Treatment as Prevention” (TasP), meaning, a positive person on successful treatment prevents new infections. To date, there is not a single confirmed report of someone with an undetectable viral load infecting someone else, in studies or in real life.

Just don’t tell that to a sizable contingent of skeptical gay men, many of whom took to their keyboards to dismiss the PARTNER findings. Phrases like “false sense of security,” “positive guys lie,” “junk science,” and “if there’s even a small risk” appeared on Facebook postings and in web site comment sections. The people of Williamson must be slowly nodding their heads.

Resistance to the PARTNER study corresponds with stubborn doubts about PrEP (pre-exposure prophylaxis, or HIV negative people taking the drug Truvada to prevent infection). Although virtually every nervous argument against PrEP has been overruled by the facts, naysayers continue to either reject the evidence outright or make moral judgments about the sex lives of HIV negative gay men on PrEP.

Yes, there are unknowns. There always are when scientific studies meet the real world. And every strategy will not work for every person. But the vehement rejection of such profound breakthroughs suggests there is something more, something deeper, going on in the minds of gay men. What is it?

Our collective memories of AIDS horror are hard to shake, and that’s a good place to start. On a gut level, any study suggesting that HIV could be neutralized is met with a weary doubt. Good news is no match for the enduring grief that has shadowed us for 30 years.

The PARTNER study also threatens the view that positive men are nothing more than risks that must be managed. The study kills the HIV positive boogeyman. It means positive gay men who know their status might actually care enough about their health to seek out care, get on treatment, and become undetectable. And, once the positive partner is no longer a particular danger, both partners would bear responsibility for their actions. What an enormous psychic change that would require in our community.

It’s tough to do that when fear creeps in and “what if?” fantasy scenarios take hold. What if my partner missed a dose yesterday and, even though HIV meds stay in the bloodstream for extended periods, his viral load has inexplicably shot up? What if he isn’t being truthful about his viral load? What if he doesn’t know?

The greater threat, folks, isn’t positive guys who think they are undetectable but are not. It’s men who think they are HIV negative but are not. But we’d rather stay focused on the positive person being at fault, because, well, people with HIV lie a lot. We miss doses constantly because we have a death wish or we’re too busy finding our next victim.

I have some “what if?” questions of my own. What if these unrealistic fears were meant tostigmatize and isolate HIV positive people? What if I am undetectable and feel no responsibility to discuss my status with a sex partner because I don’t care to engage in a science lesson? What if everyone availed themselves to prevention options that worked best for them? What if my HIV status were none of your damn business?

These risks could be alleviated, of course, if everyone simply protected their own bodies when having sex with people they don’t know or trust. But that would place an equal burden on negative men, and what a bother that is.  Better to leave that discomfort to those with HIV, vectors of disease that we are. Just consider us criminals, lying to you about our viral loads and spitting in the food in Williamson, just waiting to infect you when we get the chance.

FACE OFF -- An HIV+ Man Faces His Accuser 

As long as we’re giving undue attention to fantasy scenarios we’re not focused on the real threats. The rates of STD’s are up. Young gay black men in the United States don’t have proper access to healthcare and have infection rates worse than any developed country. Our community is plagued by  alcoholism, addiction, and mental illness. Do we want to debate established science or should we devote that energy to other challenges to gay men’s health?

If you still have the arrogance to believe you could win the HIV Powerball Lottery and be the one person who gets infected in ways science has disproven, you’re perfectly entitled to that point of view.

Here are some helpful instructions, however. Carefully step away from your computer and don’t touch the cords because 50 people die of product related electrocutions each year. Walk slowly to your bedroom, being mindful of debris in your path because slip-and-falls kill 55 people every single day. Once there, refuse food or water because, well, you never know. Now slip into your bed of willful ignorance and try to make yourself comfortable.

The good people of Williamson are keeping a spot warm just for you.

Mark

p.s. In the time it took you to read this article, the number of people who were infected by someone with HIV who had no viral load was zero.

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Thank you to Mark for allowing us to share this post. If you would like to know more about his work, you can follow his twitter feed here.

The Hidden Epidemic: HIV in Eastern Europe, Part 2

Hello there, #StigmaWarriors!

We hope you enjoyed the first installation of “The Hidden Epidemic”, which discussed the prevalence and stigma surrounding HIV/AIDS in Eastern Europe and Central Asia. In Part 2 of the blog series we will discuss the effectiveness of HIV treatment and prevention policies in three former Soviet republics: Estonia, Ukraine, and Russia. These nations have the highest HIV prevalence of all the former Soviet republics combined. In fact, data suggests that Russia and Ukraine are responsible for up to 90% of new HIV infections in the region! 

Below, we take a look at HIV programs in all three countries from most comprehensive to least comprehensive, and explain how stigma affects the ways each country treats those affected with HIV in certain populations.

Most Comprehensive: Estonia

Prevalence: Estonia has the highest HIV prevalence in the European Union, at 1.3% [1]. As a result, preventing and treating HIV is a top priority for Estonia as well as the European Union. Given that half of IDUs in Estonia are either confirmed or suspected to be infected with HIV [2], public health officials are particularly focused on ensuring that the IDU population has easy access to needle exchange and drug treatment services.

Progress: Since 1992, when the first National AIDS Prevention Program was approved, Estonia has managed to reduce the number of new HIV cases per year [3] with such activities as:

• Increasing HIV/AIDS awareness among young Estonians [4];
• Providing needle exchange services to almost half of IDUs [5];
• Establishing an HIV testing and counseling system funded by the state [6];
• Providing those living with HIV with free antiretroviral (ARV) medication [7]; and
• Creating a high-level, multisectoral HIV and AIDS committee as an advisory body for its central coordination of the implementation, including representatives of all the relevant ministries, municipalities and counties; Parliament; the office of the Prime Minister; four thematic working groups; PLHIVs; and the youth organizations’ union [8]. 

Overview of the issues in context: where does stigma fit in?

• Funding: While HIV is a priority of the Estonian government and the European Union, there is still a lack of funds for HIV organization so any funding HIV organizations receive is inconsistent at best  [9].
• As a result, drug users cannot consistently use needle exchange programs because they are sporadically funded and supplies are limited. Additionally, most of the focus on needle-exchanges has been in the capital, Tallinn, leaving needle-exchange programs in other parts of Estonia to scramble for funding and services [10]. As a result many IDUs have stopped using these programs.
• Structure of National Health Programs: Local municipalities have no clear responsibility to cover health care expenditures and therefore financing varies widely between regions [11]. Many health care commissions in Estonia have limited their roles, which means monitoring of health services for PLHIVs is inconsistent [12]. Additionally, while testing services are offered, counseling services are not, meaning many people who are diagnosed with HIV are left to deal with the emotional ramifications on their own [13].

• The national HIV response is limited in geographical location, with many programs only available in the capitol of Tallinn and the north-east region of Estonia. That means those in other regions do not have the same access to prevention, education, testing, counseling, and treatment as those in Tallinn and north-east Estonia.
• Cultural Dynamics: The majority of Estonians living with HIV are not of Estonian ancestry, but Russian migrants looking for work or Estonians of Russian descent. Many of these people are either unable or unwilling to gain Estonian citizenship due to restrictive citizenship laws [14], and because of cultural stigma against "non-Estonians" the government is reluctant to fund programs that will be able to reach these populations. Thus, the needs of a large number of those at risk of acquiring or those already living with HIV remain unmet
• Intersecting Stigmas: Like in many other countries, Estonians are reluctant to fund programs for "deviants" such as sex workers and IDUs, despite the fact that 50% of all IDUs in Estonia are either confirmed or suspected to be living with HIV.

Where do we go from here?

• The Estonian government, with help from the EU, needs to focus more on working with the most affected populations (including those who are typically or nationally stigmatized - IDUs, members of the LGBT community, sex workers, and Russian migrants). One solution could be involving more community-based organizations in testing and treatment services, and implementing counseling services along with treatment services so that people newly diagnosed with HIV would be more willing to access health services than they currently are.
• To get to zero new infections, the government needs to recognize that while HIV rates are falling in Estonia, they still need to provide greater and more consistent funding to programs that are most in need of it, particularly creating more services around the country and not just in Tallinn.

Comprehensive National HIV Programming: Ukraine

Prevalence: Currently in Ukraine HIV prevalence is estimated at 0.8-1.3%, and is one of the fastest-growing HIV epidemics in the world [15].

Progress: While the Ukrainian government was slow to begin recognizing the vast impact of HIV on Ukrainian residents, things have been improving in terms of funding and treatment options. In 1999, the All-Ukrainian Network of People Living with HIV/AIDS (Всеукраинская сеть людей, живущих с ВИЧ) was founded, and in 2004 became the key distributor of the funds Ukraine was given by the Global Fund for HIV medication and treatments (previously, this money had been given directly to the Ministry of Health/MOH, but was later shifted to this organization because of government corruption) [16]. 

Furthermore, due to improvements in Ukraine’s economy and a renewed interest in improving Ukraine’s overall health systems during the 2000s, vast improvements were also made to the HIV health care system in Ukraine, including:

• In 2005, an advertising campaign was launched highlighting that eight Ukrainians die from HIV or AIDS every day [17];
• In 2007, methadone (a synthetic drug used to treat heroin addiction) was legalized and the criteria for who could receive treatment was relaxed [18];
• In 2008, a campaign aimed at students resulted in 15,000 free anonymous HIV tests and 100,000 students receiving information about HIV and about where they could be tested [19]; and
• By April 2010, there were HIV testing and treatment centers in all 27 Ukrainian oblasts (provinces), and thousands of IDUs were benefitting from methadone treatment [20].

Overview of the issues in context: where does stigma fit in?

• Funding: The Ukrainian government is bankrupt, and that is reflected in the subsequent dearth of funding for HIV prevention and treatment, especially harm reduction. Only 32% of IDUs, for example, are reached through HIV prevention programs, and less funding is allocated towards programs for sex workers [21]. 
• Corruption is an issue in the Ukrainian government as a whole, but much of the corruption directly affects HIV patients. In 2012, the MOH was accused of embezzling money earmarked for HIV/AIDS patients, and an internal investigation was launched to see if MOH officials were utilizing funds set aside for ARVs for other uses [22]. While there was no real judicial conclusion to the investigation, the officials accused of this were fired.
• Intersecting Stigmas: As is the case in many other countries around the world, Ukrainians – especially key populations within Ukraine living with HIV - experience high levels of discrimination because of the cultural and social stigma surrounding HIV. Those living with HIV in Ukraine, for example, are forced to have a special stamp on their national ID cards indicating that they are HIV positive [23], which forces them to (perhaps unwillingly) disclose their status and often causes them to experience additional stigma and discrimination in their daily lives.

Stigma against key populations further plays out in Ukraine in the following ways:

• Drug users wishing to receive methadone treatment (which is key in preventing HIV because it stops needle sharing) are placed on an official register that can be used to exclude them from certain professions, and confidential medical records for IDUs are often shared between medical professionals and law enforcement institutions in Ukraine [24]. Additionally, the police habitually raid drug treatment clinics [25]. As a result, IDUs avoid needle exchange programs and other drug treatment services.
• Unfortunately, stigma is also applied towards orphaned children living with HIV. Many are unable to find work after leaving the orphanage, which causes many orphans to turn to drug trafficking and sex work in order to survive [26].

Where do we go from here?

• The Ukrainian government needs to address HIV-related stigma and discrimination in the government, law enforcement, and in the general population so that those who need access to basic testing and treatment can receive it without fear of harm.
• More coordination between government agencies, law enforcement, and the All-Ukrainian Network of People Living with HIV/AIDS could help decrease stigma in Ukraine. 
• Airing media presentations on the harmful effects of HIV stigma and discrimination on those affected by HIV, with a particular focus on key populations, could also be beneficial.
• Most importantly, not just for PLHIVs but for all of Ukraine, the conflict between pro-Russian belligerents and the government in Kyiv must reach some sort of conclusion. Currently, the conflict is interrupting access to treatment and testing services in Eastern Ukraine, which has the highest prevalence of HIV in Ukraine.

Least Comprehensive HIV Programming: Russia

Prevalence: Russia currently has a 1.1% prevalence of HIV, and that number is reportedly increasing, with an average infection rate of 35.7 cases for every 100,000 people reported in 2013, an increase of 7% from the past year [27]. There would be a progress section in this area, but after looking at all the issues currently in Russia it seems as there has been no progress made in the fight against HIV. 

Overview of the issues in context: where does stigma fit in?

• Funding: There is a systemic reluctance to fund programs targeted towards groups at a high-risk of contracting HIV in Russia, and multiple NGOs have pulled financial support for HIV testing and treatment in-country.  In 2012, the Global Fund officially cut its aid to Russia after years of conflict with officials from the Russian MOH over HIV services and treatment policies [28]. Additionally, many NGOs are being forced to register as 'foreign agents,' which restricts the types of activities NGOs are able to carry out [29].
• Restrictive Laws: Currently, Russian law does not support and in some cases even bans harm reduction policies, claiming these policies threaten drug control. For this reason, for example, the Russian government banned methadone in 2005 [30], despite the fact that in some cities more than half of all IDUs are either confirmed or suspected to be living with HIV [31]. 
• Even worse, the Duma (Russia’s lower house of parliament) introduced a bill in April 2014 that would forcibly require any person living with HIV, even if they were foreign nationals, to be fingerprinted and be placed in a national database of those living with "dangerous diseases," [32].
• There are reports that IDUs have been harassed and arrested by police outside needle exchange programs and pharmacies where they have bought syringes, a practice that further deters other drug users from accessing them. These negative experiences with law enforcement when trying to access services drives IDUs away from initiatives that could avert the risk of becoming infected with HIV [33]. 
• Intersecting Stigmas: As with Estonia and Ukraine, drug users and sex workers are heavily stigmatized in Russia, and because IDUs most often seek out HIV testing and treatment programs, those living with HIV who are not IDUs are also stigmatized [34]. 
• Drug and HIV treatment centers also stigmatize patients as the centers are kept segregated from the rest of the medical communities, to prevent the perceived spread of HIV via doctor-to-patient contact [35].
• Furthermore, since drug use and sex work are taboo topics in Russia, educational programs in schools only provide a cursory overview of sex and drugs, which hinders what could be effective prevention programs for children [36].

Where do we go from here?

• Russia has a long way to go before any comprehensive HIV strategy can, or will, be implemented. This is because rampant homophobia and stigma against drug users and other populations vulnerable to HIV have and continue to impede any sort of progress. Thus, addressing homophobia and stigma against key populations should be the first issue tackled in Russia’s fight against HIV.
• Russia’s increasing hostility towards the West has impeded NGOs from working with people living with HIV in-country, and multiple NGOs have pulled funds for HIV-related services from Russia. While changing the nature of the political climate in Russia may not occur overnight, NGOs and native Russians alike could work towards making small changes in local HIV policies that could make a big difference for those living with HIV in Russia. 

Until the Next Time…

It is important to remember that all countries in Eastern Europe and Central Asia have unique HIV treatment and prevention programs, and that the current state of affairs in some countries is not indicative of programs or laws in other countries. However, HIV stigma and discrimination across the region is still prevalent, especially towards key populations like IDUs and sex workers, and these attitudes and actions hinder effective treatment for those who need it the most. Awareness about these issues makes us at the SAN wonder how the United Nations and other NGOs can help or put pressure on countries to reduce HIV stigma and improve their treatment programs. 

This information also raises these questions: 

• How can other countries help and be good examples for Eastern European/Central Asian 
• Should there be a joint focus on drug and HIV prevention?
• What do you think should be done to help people living with HIV in a tough political climate?

What do you think? As always, we’d love to hear your thoughts!

New Ugandan HIV and AIDS law jeopardizes health of women, men, and children

By Anne Stangl

*This blog originally appeared on ICRW and Thomas Reuters Foundation 

Last week, Ugandan President Yoweri Museveni signed into law a bill that will likely harm the health of Uganda’s men, women, and children for years to come and could set the country back decades in progress in reducing the transmission of HIV.

The new law, the HIV and AIDS Prevention and Control Act of 2014, criminalizes the transmission of HIV, makes it legal for doctors to disclose their patients’ HIV status to partners and families without consent, and, last but not least, calls for mandatory testing for pregnant women and their partners. To be blunt, it is nothing short of a major step backward for a country that, for 30 years, has been a leader in tackling HIV head on.

A doctor draws blood from a man to check for HIV/AIDS at a mobile testing unit in Ndeeba,
a suburb in Uganda's capital Kampala, May 2014. REUTERS/Edward Echwalu

While Ugandan legislators insist that the goal of the new law is to protect the public’s health, the new law, in effect, will do little more than stigmatize and discriminate against men and women living with HIV and will likely result in fewer women and girls – and men and boys – seeking and adhering to treatment that could literally save their lives. This will lead to a huge step back in any progress made in tackling the epidemic, which affects over 1.5 million Ugandans.

This law is simply unnecessary. The law mandates that pregnant women and their partners get tested, yet research shows that women are already getting tested and previous research has found that mandatory testing has actually been shown to lead some women to avoiding getting antenatal care all together.  This new law will serve as yet another repressive measure targeted at women, but ultimately affecting the health of men and entire families, including their children.

Researching HIV stigma in Uganda for my dissertation in 2005, I got to see up close the barriers and challenges that face people living with HIV on a daily basis. Yet, I also witnessed an amazing transformation in communities where, for the first time, people living with HIV were able to access life-saving antiretroviral treatment. As men and women who were on death’s door became healthy, they were able to begin working and could contribute to their families and communities again. No longer were they viewed as a burden. No longer were they feared. No longer were their opinions disregarded because they ‘would soon die.’ Neighbors, who had previously shunned them, began stopping by to ask: how had they become healthy again? Could their relative or friend also get access to these medicines? Communities wounded by years of losing so many to AIDS, struggling with stigma and discrimination, began to mend.

Following the roll-out of antiretroviral therapy in Uganda, increases in HIV testing and care-seeking were tremendous. Home-based testing campaigns achieved over 95% acceptance in most communities. Given the gains achieved from a supportive government response to the epidemic, which was lauded globally for its high involvement of people living with HIV, I find myself wondering why the Ugandan government would go backwards. Why risk these tremendous gains, and the very lives of their citizens, by passing such a discriminatory law? 

While researchers are working every day to discover new strategies and technologies to bring an end to HIV and AIDS, we already know what will not work: stigmatizing and discriminating against those living with HIV. We know that when individuals, communities, and, as is the case here, governments stigmatize and discriminate against those who are living with HIV, others decide not to seek out treatment or stop adhering to their medication, which contributes to the further spread of HIV. When laws mandate testing and criminalize HIV transmission, expectant mothers are likely to avoid seeking health care, putting their health – and their babies’ health – at risk.

To be sure, the signing of this bill marks a sad occasion. But this new law must not be the end of the story, especially when Ugandans lives hang in the balance.

Advocates, policy makers and researchers alike must work together to urge the Government of Uganda to weigh the risk of backsliding on hard-won gains against HIV, which could result from criminalization and mandatory testing under this law. We must urge the Government of Uganda to use all appropriate means to reconsider the law, including during the development of regulations for its implementation by the Minister of Health. And lastly, we must encourage the Government of Uganda to once again be a leader in the global response to HIV by championing evidence-based, inclusive and supportive HIV policies instead of policies driven by fear and stigma.

We’ve come too far in the fight against HIV to let discriminatory laws, such as this one recently signed by President Museveni, derail decades of progress and jeopardize the health of millions of women, men, and children.