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.

A Timeline for National HIV Testing Day

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

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

1980-1984:

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

1985-1989:

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

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

1990-1994:

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

1995-1999:

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

2000-2004:

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

2005-2009:

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

2010-2014:

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

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

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

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

For National Youth HIV/AIDS Awareness Day: A Timeline of HIV in American Children

Happy National Youth HIV/AIDS Awareness Day, #StigmaWarriors! Today our blog post will be about the history of HIV and HIV-related stigma and discrimination in children and young adults. As you’ll see, the United States has come a long way from the early days of the HIV epidemic, especially when it comes to the care and treatment of children and young adults who are living with HIV. So let’s get started with our history lesson!

1969

The first known case of AIDS in children/young adults in the United States wasn’t discovered to be AIDS until 1987. Robert Rayford, a sixteen year old from St. Louis, Missouri, died of a mysterious illness in 1969 [1], several months after checking himself into the hospital for treatment. When doctors performed an autopsy, they found several abnormalities, and were so baffled by Robert’s illness that they preserved samples of his tissue. In 1987, several years after the HIV epidemic was first identified in the United States, those same doctors tested Robert’s tissue samples, and they came back positive for HIV.

1982

On December 10th, the CDC reported a case of unexplained immunodeficiency [2] (later determined to be HIV) in an infant who had received a blood transfusion. Over the next several weeks, twenty-two more cases of infants [3] who were either living with or had died from unexplained immunodeficiency were reported. Most of the children were diagnosed with immunodeficiency after a blood transfusion or it was found that the condition was transmitted to them through their mother.

1985

Ryan White [4], a hemophiliac who contracted HIV from a blood transfusion, was kicked out of Western Middle School in Kokomo, Indiana, after it was disclosed to school officials that he was living with HIV. After a drawn out court battle, White was allowed to return to school, but his parents decided to withdraw him from Western and enrolled him in Hamilton Heights High School in Cicero, Indiana, where school officials and students welcomed him with open arms after being educated about HIV. This was the first nationally known case of the effects of HIV stigma.

In December, the US Public Health Service released the first recommendations for the prevention of mother-to-child transmission [5].

1987

A federal judge ordered the DeSoto County School Board in Arcadia, Florida, to allow the three HIV-positive Ray brothers (Ricky, Robert, and Randy) to attend school after they were kicked out because the parents of other children did not want children living with HIV to attend the school [6]. The brothers were hemophiliacs and most likely contracted HIV via blood transfusions. After the judge’s decision was handed down, other parents began withdrawing their children from school, and on August 28th the Ray’s home was burned down, prompting them to flee Arcadia [7].

1988

Elizabeth Glaser, wife of Starsky and Hutch star Paul Michael Glaser and a mother living with HIV, founded the Pediatric AIDS Foundation (now the Elizabeth Glaser PediatricAIDS Foundation) [7] after their daughter Ariel died of AIDS. At this time there were no approved antiretroviral drugs for children living with HIV, and the Glasers' son Jake was dying of AIDS. Through lobbying, the EGPAF was able to get the FDA to approve antiretroviral treatments for children.

1989

Ryan White spoke before the President’s Commission about the HIV Epidemic about the HIV-related stigma he faced after his diagnosis [8], and emphasized how HIV education helped him be more accepted at his new school in Cicero. As a result, schools across the nation implemented education programs about HIV in health classes.

1990

HIV activist Ryan White died in April at the age of eighteen. Four months later, President George H. W. Bush signed the Ryan White CARE Act [9] into law, which provides government funding for HIV/AIDS research. It has been reauthorized four times, most recently in 2009.

1998

Five years after Ricky Ray’s death, Congress enacted the Ricky Ray Hemophilia Relief Fund Act [10], which authorizes payment to hemophiliacs and other people living with blood clotting disorders who were infected with HIV via contaminated blood transfusions between 1982 and 1987.

2002

Twenty years after HIV was confirmed in children, approximately thirteen million children and young people were living with HIV, mostly in Africa [11].

2006

The first National Women’s and Girl’s HIV/AIDS Awareness Day was commemorated on March 6th.

2013

In March, doctors at the CDC confirmed that a toddler in Mississippi [12] who had been diagnosed with HIV at birth had been “functionally cured” of HIV, leading to hope for a cure in children who were transmitted HIV in utero. One year later, the toddler was still free of HIV.

The first National Youth HIV/AIDS Awareness Day was commemorated on April 10th.

2014

In March, an infant in California was confirmed to be“functionally cured” of HIV [13] after receiving the same treatment as the Mississippi toddler who had been “functionally cured” of HIV one year earlier. The CDC is currently trying to work out clinical trials in order to find a cure for children prenatally exposed to HIV.

The Future

What an amazing timeline! It truly shows how the treatment of people living with HIV, especially children and young adults, has changed. Twenty years ago there were no treatments for children living with HIV, and now there are two toddlers who have been functionally cured of it! Isn’t modern medicine amazing? And now, children living with HIV don’t have to worry about being kicked out of school if their condition is diagnosed. Ryan White and the Ray brothers’ legacy is proof of that.

Who knows what the future holds? What we know it holds is a lot of hope for those living with HIV to potentially find preventative vaccines or even cures. It also holds hope for lives free of HIV-related stigma and discrimination.

Happy National Youth HIV/AIDS Awareness Day!