New HIV Campaign: My Status is Not A Secret by Josh Robbins

This post originally appeared on Josh Robbins' Blog

Conversation-starting think tank behind “Knowing” and “Open” partner with top visual agency for new engagement platform and interview series by wanting everyone to say “my status is not a secret”

The creative collective The Advisorie Group, the peeps behind “Knowing” and “Open“, never cease to get my happy-wheels turning easily.  But, this time, the championship HIV campaign might have just been taken when they partnered with Parker Trewin (AIDS/LifeCycle participant) and the hot creative agency Column Five to launch “My Status Is Not A Secret.”

“If people are going to be motivated to get tested and, if needed, get treatment, we need to bring conversations about HIV/AIDS out of the dark and into the light,” Trewin says. After living with HIV for 10 years, Trewin only recently came out to his family as HIV-positive. He adds that, “We can each play a part, which is just one reason for me to finally tell my story—and why my status is no longer a secret.”

This year, Trewin rides in the AIDS/LifeCycle with an ambitious fundraising goal to give back to two organizations that have existed since before HIV had a name: the San Francisco AIDS Foundation and the LA Gay & Lesbian Center. To support Trewin in his efforts, the My Status Is Not A Secret site offers opportunities for visitors to help fund AIDS/LifeCycle participants.

But that’s the obvious of the new HIV campaign launched 4.2.14.

For me, I’m always interested in the “why” of things.  Maybe it’s the inherent reaction I have that dates back to my childhood, when I would always ask my parents the question: “But, why?” and they would always answer: “Because.” — driving me insane.  But, I’m curious.  So, I asked the team to answer my “why” questions. They agreed.

Here are the players chatting– Parker Trewin (Inspiration for the site), John Saint-Denis (The Advisorie Group), Ian Klein (Senior Producer, Column Five and all around cool guy) and mentions of Jason Lankow (the King guru/CEO/Co-founder of Column Five). And, well, I’m Josh Robbins– and I run a cool HIV blog.

ISJ:  Why the campaign? Why the website?

Parker:  The campaign started from an ask for the AIDS/Lifecycle – a 545-mile charity bike ride. I asked Jason if Column Five, who I had worked with, would donate some funds to get me on my way.  Jason said he thought it would be more powerful to donate some time. (Actually a lot of time.)  He assigned me Ian and Andrea Bravo and we investigated two reasons why I was so passionate about my efforts: getting a second chance at life and combating stigma. We thought “stigma” was the more powerful theme and what started out as a fundraising site grew into something we think is much bigger. What makes it unique are the stories, which are incredibly powerful and are told from a very personal perspective – from gay, straight, positive, negative, men, women, white, latino, african american, middle eastern. It was important to me that we explore in the widest range possible why people (and why people don’t) know their status and share their status. I was interested in not the choices people make but why people make those choices. And if we lead by example couldn’t we then help people be more empowered to make better choices? It was a way to give back.

"What makes it unique are the stories, which are incredibly powerful and are told from a very personal perspective – from gay, straight, positive, negative, men, women, white, latino, african american, middle eastern."

ISJ:  Where did the tag come from?  Who came up with it (My Status Is Not A Secret)?

Ian:  Once there was a boy and his whiteboard…no really, I was holding a brainstorm session with our copywriter Katy French and Director of Production Andrea Bravo and it was still at that point in the meeting wherein the room wasn’t quite heated up. We were still discussing things like “desired outcomes” and company mission statements—important cornerstones to be sure—but we didn’t quite know what structure we were building. At these types of meetings, I can usually be found at the whiteboard with a pen in hand. I started writing out some of the commonly shared statements one might come across in dating applications—particularly gay ones as Parker had previously shared one he didn’t like seeing: DDF UB2 (drug and disease free, you be too). He felt that this “requirement” was a result of precisely the kind of stigma we were looking to help eradicate with this campaign—the kind of stigma that precluded people from not discussing status openly. I thought, “what would be something I’d want to hear someone say in regards to their status?” “My Status Is Not A Secret.” I wrote it without saying it out loud. Nobody said anything at first. Katy, Andrea, and I all looked at it, each other, and finally said, “Yeah. This is it.”

“Yeah. This is it.”

ISJ:  Why won’t this campaign become more of the same (i.e.: similar messages to HIV campaigns already launched and already at times exhausted)?

John:  The campaign is to educate and to open hearts, not to throw out a bunch of cold facts without context.  We sought to educate through testimony, through story, and that makes it different.  Especially in that we assembled a group of such engaging and honest participants, both for the videos and for the written testimonies. I think de-stigmatizing HIV while still encouraging folks to keep themselves and their sexual partners safe can be achieved best through compassion, and I think it’s very easy to feel compassion and love for the people revealing themselves on this site.  I also think that keeping the people in your life safe isn’t just about preventing HIV transmission, it’s about fostering safety to be honest, to feel safety in support, in being taken care of and in being loved unconditionally. Is that fluffy?  I hope not.  I found out my negative status for the first time in 1987, and have tested negative over and over since, but I am quite sure that we are all living with HIV. I’ve had long time partners who are positive.  I’ve lost many friends.  I’ve learned about living in the moment and of living in courage like no other generation of gays.  We are all in this together.

"Is that fluffy?  I hope not"

Parker:  I think its the perspective and the vulnerability of those that have stepped up to share their stories.

ISJ:  Why the social element of sharing reader submissions?  Where does it all go? 

Ian:  Knowing one’s status is an act of taking responsibility for one’s body and mind. Gay or straight, positive or negative, the ability to own that knowledge is empowering. With that knowledge an individual has the choice of whether to share one’s status with others. We wanted to have a place where people of any race, gender, sexual orientation, or HIV status could go to demonstrate that power and self-confidence. At the moment, those quotes live on the My Status Is Not A Secret site as a repository for diverse thought and opinion on knowing and disclosing status. Who knows—in the future, there could be even more paths for those stories to take.

Parker: For me it’s all about sharing. This is one way people can engage and make their own statement – which is the most powerful of all.

ISJ:  From the agency perspective, share the ‘creative’ process and how you hope it resonates.

Parker: We started with a lot of trust from the get go.  And I’m not the easiest client. I have a lot of opinions and it’s not easy for me to let go of control — especially control of my story. But I had a lot of faith in the team.

John:  The Advisorie Group, which is my agency that partnered with Column Five, came in late in the process, when we got to the videos.  We decided early on that this was only going to resonate if I were to personally sit with each of the interview participants, one on one in a small room and develop a relationship with each of them on film.  In the editing process we removed my voice asking the questions to make it all about them.  I hope that makes viewers feel like they are the ones interacting with the folks on the films.  Although that was the overlying creative process, each person’s interview was a very different experience.  Some talked nearly non-stop for up to an hour each.  Others had conversations with me and asked me questions about my own experience, which I loved.  Who could ask for a more satisfying creative endeavor?

Ian:  We approached the project in a similar fashion to other projects gathering inspiration, wireframing*, scaling and rescaling to budget, and many rounds of content, but always with a conscious eye toward elevating the human element and a respect toward people’s personal choices when it comes to HIV treatment and prevention efforts.  I’d enjoyed working with John Saint-Denis of The Advisorie Group before on a series of short films for the Impulse Group so I brought him on board as soon as it became clear we were going to be producing video. It wasn’t until the day of shooting that we decided it would be more than just one short piece. We realized in the midst of interviews that the richness and honesty contained in the stories people were entrusting us with were too precious to relegate to one video. Out of that a 45-minute documentary was born along with individual interviews that will be rolled out over the first few weeks of the campaign. My hope is that people start to think differently about HIV in that testing doesn’t have to be so frightening, that HIV can be a manageable disease for those with access to care, and that having conversations about status can lead to more intimate experiences.

"My hope is that people start to think differently about HIV in that testing doesn’t have to be so frightening, that HIV can be a manageable disease for those with access to care, and that having conversations about status can lead to more intimate experiences."

Check out this engaging and awesome HIV campaign now! 

My Status Is Not A Secret was designed and built by Column Five.  Interviews were produced by The Advisorie Group, Mimi Fuenzalida, Ian Klein, John Saint-Denis and Parker Trewin.

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Thank you to Josh for allowing us to share this post. If you would like to know more about Josh's work you can follow him on twitter here.

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.

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!

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.

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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