Supporting Social Change to Curb Violence and Eliminate HIV in Guyana, by Anne Stangl of ICRW

By Anne Stangl

*This blog originally appeared on ICRW

As I fly home from the humid, vibrant and bustling Georgetown, the capital city of Guyana, I am a bit overwhelmed by the daunting task the country faces to address the high levels of intimate partner violence, sexual assault, child abuse and suicide in the country.

Over the last week, my colleague Jocelyn Lehrer and I had the privilege of speaking with people working at community-based organizations throughout the country who are an integral part of tackling these challenges. Peer educators, social workers, nurses, counselors, people living with HIV, LGBT advocates, and survivors of violence all took time from their important work to speak with us about their efforts to create a path forward for Guyana.

My visit to the South American nation was the kick-off trip for ICRW’s grant work under Advancing Partners & Communities (APC), a USAID funded project, implemented by JSI Research & Training Institute, Inc., in partnership with FHI 360. ICRW is assisting in the implementation of the project in Guyana over the next three years, helping to strengthen the capacity of local organizations in Guyana to provide HIV prevention, care and treatment services to key populations at heightened risk of HIV infection, including women, men who have sex with men, transgender individuals and sex workers. Reaching these populations is critical for eliminating new HIV infections in Guyana, but extremely challenging, as these groups face high levels of stigma, discrimination and violence in society.

Given mounting global evidence that sexual assault and partner violence are directly linked with HIV infection, it is crucial for Guyana to tackle these key drivers of the HIV epidemic head-on.

During the trip, I learned of the great work these organizations and individuals are doing to support survivors of gender-based violence and to ultimately break the cycle of violence so that no woman or girl has to experience it in her daily life. From training police to be gender- and LGBT-sensitive, to supporting abused women, men and transgendered individuals in accessing justice, to sheltering women and children when their homes are unsafe, I could see firsthand that change is coming to communities in Guyana.

And while these conversations gave me great insight into the powerful individuals working to reduce violence in Guyana, I did see something worrying.

In interview after interview, themes began to emerge: Gender-based violence is pervasive. Services for survivors are limited or very difficult to access. Marginalized populations such as men who have sex with men, transgendered individuals and sex workers are at heightened risk of experiencing violence. Resources are limited for carrying out community- and national-level programs to change harmful gender norms and break the cycle of violence.

The stories shared by these frontline workers were reinforced daily by headlines in the local newspaper: a police officer charged with sexually assaulting a young man with a wooden police baton; a 23 year old who murdered his 14-year-old girlfriend and then hung himself. 

Despite these challenges and the ubiquitous headlines, I am cautiously optimistic about what we can accomplish.

On our final evening in Georgetown - the country’s largest urban center- we attended a production of “Before Her Parting” at the National Cultural Center. The play was written by Mosa Mathifa Telford, directed by Tivia Collins and staged by Merundoi Incorporated - a community-based organization that utilizes entertainment to educate the public, affect individuals’ attitudes and behaviors, and shift social norms. The gripping drama portrays a reality that’s all too common in Guyana in which young woman is murdered by her husband, who then kills himself. The plot could have been ripped straight from recent headlines.

The play also explores the intergenerational cycle of abuse that fosters violence generation after generation in Guyanese society: A woman is abused by her husband and is violent toward her son; her son grows up to beat and ultimately murder his wife, and the cycle continues. The play was followed by a facilitated discussion with the more than 400 audience members, ranging from students to teachers to civil servants, and a panel of speakers from various government institutions. It was heartening to hear these young Guyanese demand both action to reduce violence and expanded services to support survivors.

It is my hope that though USAID’s Advancing Partners and Communities Initiative, ICRW and John Snow International will be able to strengthen the capacity of local organizations so they are better equipped to respond to gender-based violence in Guyana and can continue to facilitate social norm changes to reduce violence and reduce the spread of HIV infection.

Above all, from my time in Guyana, I saw hope and determination. Hope that the next generation will not see the type of endemic violence that has pervaded Guyana for decades, and be determined to tackle these problems head-on. It’s important that those of us in the global community echo that hope and determination, too. We need to ensure that community workers and advocates have the tools to end these human rights violations as well as to empower women and girls to live free from fear of violence or abuse.

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Thank you to Anne for allowing us to share this post. If you would like to know more about what Anne does at ICRW, check out her twitter feed.

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!

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.

A Guest Post from Darby Hickey, from Best Practices Policy Project

Stigma kills. That’s an idea that, sadly, many communities understand and experience, including sex workers and people involved in sex trades. The pervasive social and governmental stigma and discrimination against those who trade sex for money or other needs is something that organizations fighting for the rights of sex workers are tackling head-on. Directly related to such stigma are laws that criminalize large swaths of commercial sex. This manifests through indifference and hostility from police, governmental authorities, and society when people who have traded sex for money are killed, attacked or raped—“they were asking for it” is the typical line.  It also manifests in persistent stereotypes of sex workers as “disease ridden” or “vectors of disease”, even as police the world over take condoms from sex workers or use them as evidence of criminal activity. 

 

The Best Practices Policy Project works to end such stigma and change laws through movement building and policy reform. An all-volunteer group composed of sex workers and allies, BPPP works largely on the national level in the U.S. to support other sex worker rights groups and to encourage the federal and local governments to protect the rights of people engaged in transactional sex in all its forms. Most recently we have been supporting the campaign of Monica Jones and SWOP-Phoenix to stop racist and gender profiling in Arizona and end a terrible program there that claims to give sex workers alternatives to jail but actually increases arrests and incarceration. We documented the work in Phoenix as an example of harmful policing practices in a report we submitted to the United Nations—which we used to pressure the U.S. government to address rights violations against sex workers.

One of the newer forms of stigma facing our communities is spread by some groups claiming to fight human trafficking. But instead of addressing this terrible phenomenon, these organizations claim that all commercial sex is violence and that the only solution is to increase criminal penalties and arrest people in order to save them. This approach not only does tremendous harm to sex workers, it also distracts from efforts to help people who actually experience coercion and exploitation, in the sex sector and the many other sectors where trafficking occurs. What’s more, these groups are now directly trying to undermine years of work to establish best practices for HIV interventions with sex workers. Well-financed organizations are attacking UNAIDS, for example, for its human rights approach to sex work, while also condemning extremely effective HIV outreach and treatment programs working with sex workers. Shockingly, groups promoting these “rescue” efforts view an increase of stigma as a positive development in their efforts to “eradicate” commercial sex.

From our perspective, criminalization and stigma go hand in hand, and we must combat both at the same time. When people are criminalized and stigmatized, they cannot claim their rights and are subject to serious rights violations. When sex workers and other people involved in sex trade are not criminalized they can better organize and demand protection of their human rights. Removing stigma helps people to see that sex workers are not deviants or victims but simply people trying to make a living just like others. When society and governments treat sex workers as human beings deserving of all the rights that any human has, people in the sex trades can be valued for their expertise. As sex workers all over the world say—we are not the problem, we are part of the solution.  

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We would like to thank Darby for her guest post. If you would like to see more about what Darby or the Best Practices Policy Project does, check out her twitter feed.