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

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

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

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

1. My Dad Has HIV by Earl Alexander

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

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

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

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

3. I am HIV-Positive by Wendy Flanagan

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

4. Little Feet, Big Steps by Brit Sharon

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

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

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

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

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

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

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

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

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!

Soccer: More Than Just a Game

By Anna Charles

At this time of year, soccer fans (or football fans, depending on where you are from)  around the world are turning their minds and their televisions to the 2014 FIFA World Cup. With millions across the globe tuning in to cheer for their favorite teams, many international health organizations are tapping into this soccer fanaticism, and employing soccer as an innovative medium to talk about HIV.  Soccer is one of, if not the most popular sport in the world, and groups such as UNAIDS and Grassroots Soccer are using the excitement around this sport to reach out to youth and to facilitate programs to educate them about HIV prevention and stigma reduction.

 At the Africa Cup of Nations in January 2013, UNAIDS presented their “Protect the Goal” Campaign, with goals of both preventing and raising awareness of HIV. HIV prevention information was posted on screens in the stadiums and prominent players backed the campaign by reading statements of support for this campaign before each game as they stood before their fans. With thousands of fans who look up to these teams and players, the campaign had a radically successful start [1]. A year and a half later, Protect the Goal has come to Brazil for the 2014 FIFA World Cup. Now backed by the President of Brazil, [2] Protect the Goal has been able to make an even greater impact, especially by offering free HIV tests to fans in Brazilian host cities. Renowned players like David Luiz are also joining the campaign and calling on their thousands of fans to join them in stopping the spread of HIV and stigma [3].

 Another organization, Grassroots Soccer, has taken a different approach to using soccer as a means of reducing HIV. They have built and refined a curriculum called “Skillz”, a new approach that uses soccer exercises to help kids learn about HIV risks and prevention.  For example, in one of their activities, called “Risk Field,” “participants dribble a soccer ball in between cones representing HIV-related risks—multiple partners, drug/alcohol abuse, sugar daddies, etc. If one player hits a cone, he and his teammates must complete 3 pushups, showing how the consequences of one person’s risk can not only affect him, but also his friends, family, and community" [4]. This is a revolutionary new way of educating kids, and allows the participants to feel more engaged in what they are learning.

Grassroots Soccer is using methods  that have proven results. One study in Zimbabwe found that, among many other encouraging statistics, students participating in the program who knew where to go for problems related to HIV increased dramatically, from 47% to 76% [5]. Like the Protect the Goal campaign, Grassroots Soccer is backed by a number of well-known players, such as AlexSong, Oguchi Onyewu, Christen Press, and more, [6] and is therefore able to reach a wide audience of fans that look up to and respect these players.

As evident by the campaigns and programs above, it is undeniable that sports have a great influence and can be used to unite and educate groups of people. Nelson Mandela said it best, “Sport has the power to change the world. It has the power to inspire. It has the power to unite people in a way that little else does. It speaks to youth in a language they understand. Sport can create hope where once there was only despair.” Soccer is more than just a game; it’s a powerful tool that can bring motivation, solutions, and hope to people around the world working to end HIV and the associated stigma and discrimination.


References:

1.http://www.unaids.org/en/resources/presscentre/pressreleaseandstatementarchive/2014/march/20140305prptg/

2.http://www.unaids.org/en/resources/presscentre/featurestories/2014/june/20140611ptgbrazilpresident/

3.http://www.unaids.org/en/resources/presscentre/featurestories/2014/june/20140610ptgbrazil/

4.http://www.grassrootsoccer.org/what-we-do/skillz/

5.http://www.grassrootsoccer.org/research-development/proven-results/

6.http://www.grassrootsoccer.org/who-we-are/pro-ambassadors/

Orange, Fuzzy, Feisty, and HIV-Positive: Meet Kami

By: Adriana Ganci

Since its premiere on public television in 1969, Sesame Street has been a keystone program in teaching children about diversity and acceptance. The show has historically depicted people of different ethnicities, nationalities, religions and abilities. Sesame Street is, in fact, where many children begin their educational journeys. Big Bird and Elmo are household names. But how many Americans have heard of the Muppet, Kami? Chances are, not many. But everyone should.

Kami is a character who originated on South Africa’s Takalani Sesame in 2002. She has a feisty spirit and loves the outdoors and playing soccer. She is also HIV-positive. In a country where 5.5 million people are living with HIV, the social impact of this issue on children is not one that can be ignored. Because the show is aimed at little tykes aged three-seven, the goal of this programming is not to teach about the importance of protected sex or about the dangers of sharing intravenous needles. The goal, instead, is to portray the life of Kami in a way that resembles the lives of hundreds of thousands of children in South Africa – the life of a child who loves to have fun, the life of a child who lives with HIV, and the life of a child whose parent died as a result of having AIDS. For too long there has been a culture of stigma and silence regarding this globally pervasive issue. Kami seeks to reduce this HIV-related stigma by exposing children to a friendly, likeable, and relatable character from a very young age.

How exactly does Kami work to fight against stigma? She loves playing the train game where everyone holds each other’s shoulders and pretends they are a train. In sharing this game – which, of course, involves physically touching your friends – Kami teaches us that playing games and giving hugs and high fives cannot transfer HIV. Kami also has a memory box that her mother left her before she passed away, filled with happy mementos like pictures of the two of them and her mom’s favorite scarf. Grieving is a very important process for children who lose parents, and Kami teaches us that, while the process is very difficult, evoking happy memories is a very good way to cope. When Kami isn’t singing about keeping the earth clean or kicking a soccer ball around, she is talking with the likes of Archbishop Desmond Tutu and Former President Bill Clinton, and thanking them for the work they’ve done for children like herself living with HIV. Both men have told Kami that she is the real hero. Kami’s accolade doesn’t end there – UNICEF also named Kami a “Champion of Children” in 2003. [1]

Kami was created by Sesame Workshop, the nonprofit organization behind the 45 years of work that Sesame Street has done to acknowledge key critical educational needs in the now 150 countries in which the show airs. [2] Sesame Workshop brings in experts to consult on creative ways to relay these important lessons to children. Projects by Sesame Workshop include an entire array of academic, social and emotional topics: they run the gamut from introducing a Muppet whose father is in prison to airing episodes discussing the importance of improving the education of girls worldwide.

Each project includes extensive post-production research on the actual educational impacts of the programs. Through this research, Sesame Workshop discovered that parents who have seen Kami on television are twice as likely to talk to their children about HIV and AIDS than parents who do not know Kami. Sesame Workshop has also concluded that since the introduction of Kami into the cast, children exposed to Takalani Sesame have demonstrated measurable increases in their knowledge of HIV, de-stigmatization of HIV, and the ability to cope with illness. [3] Due to Kami’s success in South Africa, producers who were creating Nigeria’s Sesame Square decided to also use Kami with the show’s launch in 2010.With nearly 278,000 children in Nigeria living with HIV, there was a need for a character like Kami. Bearing in mind that only about a quarter of Nigerian households have a television, the show’s creators have also created a campaign that extends to radio, cell phones, publications and school materials. [4]

When a person is able to closely identify with something like HIV they are generally able to understand it better. It also makes good sense that we, as humans, are less fearful, and thus less stigmatizing, of things we clearly understand.  Thus, using someone who is vibrant, young, and fun-loving like Kami to introduce the subject of HIV to children of a young age helps to reinforce the idea that those living with HIV are people just like those not living with HIV. Aiming these lessons at children will help South Africa and Nigeria to end the culture of silence and stigma surrounding HIV which, in turn, has the potential to lower the infection rates in those countries. Kami has the potential to help the next generation of South African children become the most accepting generation yet. This is fitting since “Kami” is the Setswana word for “acceptance”.

When Kami joined Takalani Sesame in 2002, some conservative legislators in the U.S. sent a letter to PBS stating that if PBS were to utilize the HIV-positive character in the American show, their funding would be threatened. [5] American children have come to love Muppets who are in wheelchairs, Muppets who are blind, Muppets who are different colors and those that practice different faiths. Hiding the idea of HIV from children will only continue to feed ignorance and fear and encourage stigma towards those living with HIV for years to come. There is no reason that American children would not come to adore Kami, just as others did in South Africa and Nigeria. With a name that literally means “acceptance”, it sounds like it is definitely time to make Kami a household American name.

1.  http://www.unicef.org/media/media_16631.htm

2. http://www.sesameworkshop.org/what-we-do/our-research-model/

3. http://www.sesameworkshop.org/what-we-do/our-research-model/

4. http://www.cnn.com/2010/SHOWBIZ/TV/10/06/sesame.street.nigeria/

5. http://www.queerty.com/could-hiv-muppet-kami-ever-move-into-americas-sesame-street-20100104

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!