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!

Redoubling efforts to fight stigma and discrimination key to ending AIDS

By Anne Stangl
**This blog post originally appeared on Devex.com

It’s been 30 years since HIV was identified as the cause of AIDS, and since then we’ve made significant progress in fighting the epidemic.

The massive rollout of antiretroviral drugs worldwide has dramatically reduced AIDS-related deaths and prolonged the lives of millions of people. Innovative biomedical interventions — such as microbicides, male circumcision, universal testing and ARV prophylaxis for preventing transmission from mother to child — have greatly expanded our collective prevention toolbox. Great strides have also been made in understanding how to deliver services and motivate uptake and adherence, from home-based HIV testing to education entertainment programs like Soul City. And perhaps most importantly, the tremendous advocacy efforts of people living with HIV in countries like South Africa and the United States have ensured widespread access to affordable, lifesaving treatment.

Although we have a lot to celebrate, we must remember that we’re not even close to ending this epidemic.

This week, the 20th International AIDS Conference is taking place in Melbourne, Australia, under the theme “Nobody left behind,” which underlines the need to use a human rights-based approach to ensure that everyone — especially those who are most at risk and affected by HIV and AIDS — receives treatment. We cannot accomplish this without overcoming one of the most devastating barriers to prevention and treatment: stigma and discrimination.

The problem

Stigma and discrimination prevent millions of people, especially vulnerable populations like women and youth, from accessing the prevention and treatment they need.  

According to the 2014 Gap Report recently published by UNAIDS, more than half of those living with HIV globally do not know they have the virus because they have yet to get tested. Equally troubling, UNAIDS also notes that while more than 28 million individuals around the world need treatment, only 34 percent of these individuals had access to treatment. How does this happen? In many countries, the culprit is pervasive social stigma and discrimination in clinics and at both the local and national levels.

For example, a whopping 60 percent of countries around the world have laws, regulations or policies that prevent populations most at risk of HIV infection — like pregnant women, men who have sex with men, and people who inject drugs — from accessing these services. HIV transmission or the failure to disclose one’s HIV status to a sexual partner is criminalized in more than 60 countries. Additionally, 40 countries impose some form of restriction on entry, stay and residence of people living with HIV; 18 deport individuals whose HIV positive status is made public; and five countries have a complete ban on the entry and stay of individuals living with HIV.

Efforts to stigmatize and discriminate against populations living with HIV do nothing to reduce the rates of transmission. Instead, they keep people from getting tested for HIV and prevent people living with HIV from disclosing their status to partners, accessing care and adhering to treatment.

Small wins make a huge difference

Despite these worrying developments, organizations working to reduce stigma and discrimination have made significant progress over the past couple of years. For example, the 2014 Global AIDS Response Progress Report, which details the landscape of the epidemic around the world, now includes a section on measuring how many people hold discriminatory attitudes toward those living with HIV. Additionally, the U.S. State Department just released instructions on how embassies can work to track levels of HIV-related stigma and discrimination in countries as part of the department’s annual Human Rights report.

While these may seem like small wins, they’ll make a huge difference in measuring where stigma and discriminatory attitudes exist so that countries can better target their efforts to reduce these harmful social norms.

For far too long, gaps in data have prevented countries from truly understanding how stigma and discrimination prevent vulnerable populations from using needed health care services, and these efforts will help fill those gaps. The International Center for Research on Women is helping in this effort, undertaking important research on how HIV stigma and discrimination among health workers and communities in South Africa and Zambia influence the success of biomedical approaches to HIV prevention. This research will help inform how best to scale up new biomedical prevention strategies to ensure that the general population is open to accepting and adhering to them.

As the world’s attention turns to HIV and AIDS this week, we must redouble our efforts to ensure that sufficient attention is focused on how to reduce and overcome the stigma and discrimination that are impeding efforts to end AIDS. When we work together to end stigma and discrimination, we will be able to ensure that all people — regardless of their sexual orientation, race, age, gender or class — have access to vital HIV prevention, care and treatment services.

For more information on sessions and events at AIDS 2014 focused on stigma and discrimination, check out the Stigma Action Network's "stigma road map." 

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amfAR’s GMT Initiative is Combating the Stigma and Discrimination that Fuel HIV Infections among LGBT Worldwide

By: Lucile Scott, amfAR

Since its inception in 2007, amfAR’s GMT Initiative has provided financial and technical support to over 164 community organizations working on the front lines of the epidemic to reduce the spread and impact of HIV among gay men, other men who have sex with men, and transgender individuals (collectively, GMT) in low- and middle-income countries. Worldwide, as treatment access and prevention science improves, stigma and discrimination is often the main barrier to reducing infection rates and improving access to care among GMT. Stigma and discrimination affect every aspect and stage of HIV treatment and prevention, from putting individuals at greater risk of engaging in high-risk behavior that can lead to HIV infection to preventing them from accessing health and testing services to stopping governments from targeting them with HIV treatment and prevention efforts—though they are often one of -- if not the-- most impacted populations in that government’s country.

amfAR launches a new report providing the first-ever
comprehensive analysis of the financing and implementation
of HIV programs for GMT in Southern Africa

The GMT Initiative provides funding and support for localized capacity-strengthening mentoring. This helps grantee partners develop advocacy, outreach, and training programs that target GMT, healthcare providers, governments, and the general population to reduce the stigma and discrimination they face. Many are doing this work in countries where homosexuality is illegal, and HIV rates are high.

Through these programs, our grantees

-train and empower members of the GMT community to perform peer HIV services and advocate for their rights

-train healthcare workers about how to provide GMT with stigma and discrimination-free care

-advocate for governments to overturn discriminatory policies that deny GMT rights, including proper healthcare

-train the governments about how to better reach GMT with HIV messaging once they have removed policy and legal barriers to doing so. 

The organizations also organize campaigns, performances, protests, and more that aim to educate the general population about the GMT community. The GMT Initiative continues to support our partner organizations as they grow and work to formalize and evaluate their programs to improve their impact and to better understand and pass on to others what strategies work most effectively.

In the past year, while our grantees have witnessed many milestones in combating stigma and discrimination, they have also witnessed much backlash to that progress. For instance, in Uganda, advocates recently succeeded in convincing the government to include GMT in their national HIV strategy. However, in December the Parliament passed a law criminalizing “promotion of homosexuality,” forcing those providing GMT with HIV services, including our grantee partner Spectrum Uganda, to—at-the-least temporarily—shut those services down. While that bill has not yet been signed into law by the President, similar bills passed in Nigeria and Russia were. They have also severely and, unless they are repealed, permanently curtailed our grantees’ and other organizations’ ability to do HIV outreach among GMT, reversing years of progress, and wasting millions of dollars in global AIDS funding.

amfAR grantee-partner SOMOSGAY's new
 men's health center during its launch party

But in Armenia, as a similar law was under debate (that has not passed), grantee partner We for Civil Equality worked with doctors, social workers and human rights structures within the Armenian government to create a strong medical referral system to help GMT living with HIV access non-discriminatory care and obtain their life-saving medications. And in Paraguay, our long-time grantee partner SOMOSGAY opened a men’s health center created to cater to the needs of GMT. Three grantee partner organizations in Togo hosted a workshop for members of the media on how to improve their stigmatizing portrayals of GMT. And in Argentina, grantee partner Asociación de Travestis, Transexuales, Transgéneros Argentinas (ATTTA) started shooting a documentary to educate the general population about the discrimination and barriers to equal rights that trans people experience each day.

A film shoot for amfAR grantee-partner ATTTA's documentary
about the fight for trans rights in Argentina  

As Yves Yomb, executive director of Alternatives-Cameroun, told us in July, shortly after a string of attacks against Cameroonian LGBT activists and organizations forced Alternatives to shut down their HIV outreach operations, “We know this revolution will take time, as do all the revolutions in the world.  We don't know if we will see the result, but we hope in 10 or 20 years, people will say the fight for gay rights began in 2005, and thanks to them we have the rights that we have at this moment.”

 And these are just a few of our grantee partners’ stories and successes. To read more about how they confront and combat stigma and discrimination, please read our GMT Initiative blog, Grassroots.