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!

The Hidden Epidemic: HIV/AIDS in Eastern Europe and Central Asia, Part 1

When HIV is discussed at the international level, let’s face it, most people think of Africa and Southeast Asia as the regions where HIV is spreading most rapidly. That is where most media, celebrity, and NGO attention is focused with regards to prevention and education. However, HIV/AIDS is spreading most rapidly in Eastern Europe and Central Asia [1]

To put this in context: between 2001 and 2011, the prevalence of HIV in Eastern Europe and Central Asia increased by 250%; during that same time period, prevalence fell by 0.8% in Africa and stabilized at 0.3% in Southeast Asia [2].  Yet despite this reality, the spread of HIV in this region receives little to no media coverage both domestically or internationally.

Due to the limited awareness and coverage on this, the SAN will be showcasing a blog series discussing the effects of stigma in Central and Eastern Europe, and what the world can do to make this problem better known. This first part of the series will serve to give you, our #StigmaWarriors, some background on the stats, policies, and social environment of Eastern Europe and Central Asia.

Knowing the Numbers

Approximately 1.4 million people (1% of the population) in Eastern Europe and Central Asia are living with HIV [3]. However, this is an estimate based on the current number of people who have been officially diagnosed with HIV. In reality the number may actually be higher due to underreporting, a direct result of stigma and discrimination people may experience around HIV testing and disclosure.

The countries with the largest populations of people living with HIV are Estonia, Russia, and Ukraine. Currently, Russia and Ukraine account for 90% of new cases each year in this region [4]. Below we have included a table of the HIV prevalence among adults in each country in this region.

HIV Prevalence in Eastern Europe and Central Asia:

Country	# of adults living with HIV	Prevalence
Estonia	9,900	1.3%
Russia	980,000	1.1%
Ukraine	350,000	0.8%
Latvia	10,000	0.7%
Belarus	13,000	0.4%
Kyrgyzstan	4,200	0.4%
Romania	15,000	0.3%
Tajikistan	10,000	0.3%
Armenia	3,500	0.2%
Georgia	2,700	0.2%
Kazakhstan	12,000	0.2%
Azerbaijan	7,800	0.1%
Bulgaria	3,800	0.1%
Hungary	3,300	0.1%
Lithuania	2,200	0.1%
Poland	20,000	0.1%
Turkmenistan	200	0.1%
Uzbekistan	16,000	0.1%

Source: [5]

In Eastern Europe and Central Asia, HIV/AIDS is currently concentrated, but not limited, among drug users and sex workers and their partners. Other populations affected are prisoners, MSM, and children who have parents living with HIV, but their numbers are small compared to the number of sex workers and drug users affected. 

Among drug users, approximately 20% are living with HIV, though the number could be even higher [6]. Furthermore one-quarter of the world’s injecting drug users live in Eastern Europe and Central Asia, and approximately 80% of new HIV cases are transmitted via injecting drug use [7]!  Among sex workers, 11% of this population are living with HIV [8].  It is even higher for sex workers who inject drugs; 43% for Ukrainian sex workers who inject drugs, compared to 8.5% for those who do not [9]. Lack of knowledge about the spread of HIV is a leading cause of high HIV prevalence among these groups. Only 8% of sex workers in Georgia know how HIV is spread, compared to 29% in Moldova and 36% in Uzbekistan [10]. It is also believed that the spread of HIV has been allowed to escalate due to very little funds targeting drug users, sex workers, and MSM, This is confirmed by UNAIDS Regional Program Adviser Roman Gailevich, who stated: "Governments everywhere are reluctant to spend money on sex workers, on drug users, but MSM comes at the top of the reluctance list. It is probably the last programs that the governments will start." [11]

Policy and Social Issues

Given the aforementioned statistics, it should come as no surprise that currently in Eastern Europe and Central Asia, HIV/AIDS is met with secrecy and derision , and HIV-related stigmas discourage testing and treatment – even at the policy level. Let consider the policies in Russia, for example. The Russian government does not allow harm reduction policies, such as needle-sharing programs because they claim it would threaten drug prevention programs by encouraging people to use injectable drugs [12]. Additionally, HIV treatment centers are separated from the rest of the medical community [13]. This is particularly troubling, not only because it inhibits individuals from receiving treatment, but as a result of the new gay propaganda laws, the threat of violence, social alienation, and arrest this has amplified individual’s concerns of being seen entering a HIV clinic and being perceived as gay.

These policies inform people’s perspectives on HIV and fuel stigma. Stigma is so prevalent that many of those who know their HIV status state that they do not fear dying as much as they fear the stigma associated with HIV [14]. The ugly reality for people living with HIV in this region, though it is applicable in other settings, is that they are more likely to be discriminated against when looking for employment, and there is a lack of confidential legal avenues for people living with HIV could to use to prevent such discrimination. As one man living with HIV in Georgia said:

"I know beforehand my status will certainly hinder the chance to get job or to be promoted… I do not search for a job as I think they will have a negative attitude towards me." [15]

Not even children are protected from HIV stigma. About 75% of parents of schoolchildren stated they would remove their child from school if they found out there was a child living with HIV attending the school [16], and one schoolteacher remarked:

 “Yes they [people living with HIV] are really dangerous. I think that such children [living with HIV] should not attend neither schools nor kindergarten as the other children will be safe”. [17]

Consequently, many children are forced to hide their status, until they are out-ed vis-à-vis a stamp on their national IDs that all people living with HIV are forced to carry [18].

This leads to much internalized shame and stigma, and explains why HIV is growing so rapidly in-country.

Until Next Time…

It is clear that there is a long way to go before the stigma facing people living with HIV in Eastern Europe and Central Asia is gone. The quality of life for those living with HIV is highly unstable, due to stigma and poor quality of medical care. This is a setback to the prevention of HIV, and to the quality of life for such individuals.

• What do you think about this issue?
• Why do you think HIV/AIDS in Eastern Europe/Central Asia hasn't been discussed much in the media?
• What do you think can be done to bring more attention to this?

Be sure to look out for our next post, where we will be discussing inter-country programs, and the various successes and failures of individual countries in implementing HIV prevention, treatment, and anti-stigma programs.

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

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

 

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

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

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

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

5 Female #StigmaWarriors who will inspire

For those of you not in the know, Saturday the 8th is InternationalWomen’s Day, and Monday the 10th is National Women’s and Girl’s HIV/AIDSAwareness Day! All week long we have been participating in these awareness days and today we are celebrating some INCREDIBLE women who are living with HIV and fighting against stigma every day. We have highlighted five amazing female #StigmaWarriors-- though there are so many to choose from!!! Below please find a profile of each of these female #StigmaWarriors and the ways they work to stop stigma. 

We hope they will inspire you – as they inspire us every day - to join them in stopping stigma!

____________

Paige Rawl:

Paige Rawl is a young HIV activist who was diagnosed at the age of two. When Paige was in the sixth grade, she confided to her best friend that she was HIV-positive, and within two weeks, the entire school knew that she was living with HIV. Because students didn’t understand what living with HIV meant, Paige was bullied so much she was forced to leave school.

When Paige entered the ninth grade, she decided to turn her negative experiences into positive lessons.  At the age of fourteen she received certification by the American RedCross and became an HIV/AIDS educator. She is the youngest person who has ever received this type of certification from the Red Cross. Paige began traveling the country speaking at schools about living with HIV. She has also worked with such programs as the Indianapolis Urban League "to encourage young adults to take control of their sexual health and fight back against bullying" [1]. She even helped pass anti-bullying legislation in her home state of Indiana. Because of this extraordinary activism Paige was nominated for Seventeen Magazine’s ‘Pretty Amazing’ contestand finished in the top five.

Paige currently attends Ball State University where she is studying for a degree in Molecular Biology and hopes to become an HIV/AIDS researcher, and plans to continue to use her inspiring story to fight HIV stigma.

Hydeia Broadbent:

Hydeia was diagnosed with HIV at the age of three and by the age of six years she began her HIV/AIDS activism. Hydeia is the first African-American youth to be an HIV/AIDS activist. By the time she was twelve years old she had appeared on many national television shows, including:

• Oprah
• 20/20
• Good Morning America
• “A Conversation with Magic Johnson” on Nickelodeon.

Ebony Magazine named Hydeia one of the Most Influential 150 African Americans in 2008 and 2011. She has also been honored by the American Red Cross and received an Essence Award in 1999.

With her high pitched voice and sweet braids, Hydeia captured the hearts of the nation with ten words: “I just want people to know that [people living with HIV] are normal people.” [2] She is the little girl with AIDS who grew up, and at a time when HIV was severely misunderstood she put a human face on the condition. Hydeia continues to fight stigma through speaking engagements.

Elizabeth Glaser:

Elizabeth contracted HIV through medical malpractice and unknowingly passed the virus to her children, Ariel and Jake. Neither Ariel nor Jake could be treated because there were no antiretroviral medications approved to treat children at the time, and doctors did not believe that HIV/AIDS was prevalent among children. After Ariel’s death in 1988, and her fear that Jake would die shortly after, Elizabeth founded the Elizabeth Glaser Pediatric AIDS Foundation in order to bring hope to children living with HIV/AIDS. It spurred federal funding to study mother-to-child transmission and to produce antiretroviral medication for children.

While she passed away in 1994, her legacy lives on in Jake and the foundation that bears her name. By fighting to get treatment for her children, Elizabeth made sure that no child would ever again have to go through what Ariel and Jake went through.

Today EGPAF:

• Is supporting 7,300 HIV clinics  around the world, and programs have reached nearly 18 million women with PMTCT services
•  Has tested more than 16 million women for HIV;
•  Has enrolled nearly 2.1 million individuals, including more than 165,000 children, into HIV care and support programs; and
• Has started more than 1.1 million individuals, including nearly 99,000 children, on antiretroviral treatment.

Beatrice Were:

Africa’s most famous HIV/AIDS activist, Beatrice Were first came to fame when she publically disclosed her status and spoke out against the Ugandan government’s policies about the issue. In 1993, after her first husband died of AIDS, she founded the National Community of Women Living With HIV/AIDSin Uganda (NACOWLA), a grassroots organization which provides support and services to more than 40,000 women living with HIV in Uganda.

Beatrice first went public with her HIV status in 1995, largely to combat stigma in Uganda. Prior to her coming out about her status many did not believe someone with HIV could lead a grassroots organization to combat HIV stigma, but Beatrice proved them wrong. The surrounding media attention helped her draw attention to the largest issues facing African women living with HIV, which included lack of access to medical care and lack of support systems. Thanks to Beatrice’s guidance, grassroots organizations that fought against stigma resulted in international praise for Uganda’s HIV prevention programs. However, she has been critical of PEPFAR for allowing radical evangelicalgroups to come in and spread HIV stigma.

Beatrice continues her HIV activism and continues to promote programs which effectively fight HIV stigma.

Nina Martinez:

After being diagnosed with HIV as a young child, Nina Martinez inadvertently fought stigma thanks to her belief that HIV made her automatically related to Magic Johnson, which quickly made her popular among her peers. Her HIV activism truly took off during her time as an undergraduate at Georgetown; there Nina volunteered for research studies at the NIH and participated in the Georgetown AIDS Coalition. She has always felt comfortable in her own skin and honest about her status, and has found that has helped combat HIV stigma..

Nina fought stigma by being honest about her condition and through using humor to be open about her HIV status. Today Nina holds a master’s degree in Public Health and works as an HIV researcher. She also continues her activism through interviews and posts over social media.

________

I hope these women have inspired you to join in the fight against HIV stigma – they certainly have inspired us at the SAN! Each of them demonstrates that if you believe in this cause, in your own way you can make a difference as a #StigmaWarrior. Fighting stigma is as simple as listening to someone living with HIV or going on Google and educating yourself about stigma. You can also volunteer at many places, including the Elizabeth Glaser Pediatric AIDS Foundation, or donate to NAWCOLA. It doesn't take much for you to make a world of difference and be a #StigmaWarrior!

Happy Women’s Day to all!

Happy Valentine's Day and Happy National Condom Day!

Happy Valentine’s Day to our beloved #StigmaWarriors!

Did you know that February 14th is not only Valentine’s Day, but also National Condom Day as well??? It is a pretty perfect combo because what could be a better way to show someone you love them than by keeping safe and protected? [AND—as if that wasn’t cool enough—it gives you an opportunity to get creative and deviate from the cliché heart-shaped boxes of calories and overpriced flowers that will barely last the weekend! But I’m getting ahead of myself!]

To celebrate both National Condom Day and Valentine’s Day we’re going to discuss the many merits of condom use, but first let’s have a little fun with some possible ideas for your very own DIY cute and creative Valentine’s Day condom crafts!

1. For an easy one, why not make some DIY valentines with condoms? Simply write a loving message to someone on a condom with a sharpie! It’s that easy!

2. If you’re just in it for the candy, buy a chocolate box and fill it with condoms! After all, studies show that it takes an hour of sex to burn off one box of chocolate…

3. If you want something a bit more creative, why not a bouquet – with the flowers made out of condoms?! All you need is some rose-colored condoms (personally I like pink!), some wire, and tape, and there you have it! A lovely condom bouquet to give to your sweetie. 

4. If you don’t like flowers, and you really want to put yourself out there, you can make yourself a lovely condom dress out of expired condoms to wow your date! The condoms may be past their prime, but this style will last! (Though obviously don't use the expired condoms for intercourse!)

Look at all the potential for condoms on Valentine’s Day/National Condom Day! Though let’s put the, crafts and fun aside for a moment now, and discuss the important role condoms play in protecting you against a whole host of STDs, including HIV. Latex condoms are the best option, though if you or your partner has a latex allergy, you can use plastic condoms. It is important to remember to only use latex or plastic condoms, as natural condoms, such as sheepskin, are porous.

It is extremely important for you to have a discussion with your partner about condoms and protection, especially prior to sex, and in some cases to take initiative to purchase condoms on your own. If you’re nervous about having this discussion with your partner, have the discussion with yourself first– visit this site with some tips about conducting this conversation! 

Basic Facts about Condoms and Protection:

A Female Condom

• When used properly, male condoms can protect you up to 98% of the time (and between 75-85% when used normally) [1]. In fact, condoms are so effective that they make sex 10,000x safer than if you don’t use one (Planned Parenthood) [2]! Only water-based lubes can be used with these condoms, as oil-based lubes or Vaseline can break down the condom (WebMD) [3].
• Though not as much research has been done on female condoms, it has been proven that HIV cannot pass through these contraceptives (CDC) [4], and that any type of lube can be used without the condom breaking. Female condoms can also be inserted long before sex, so even if you and your partner decide to have sex at the spur of the moment, you can still be safe!

What does all this talk about condoms mean for those living with HIV and looking for love (or for those lucky ducks who have already found it!)? Well, it means you can do anything that those who are not living with HIV can do! Many people living with HIV believe their diagnosis will force them to be alone –we here at the SAN love busting myths, so want to shout from the rooftops that this is absolutely not true! HIV cannot travel through plastic or latex condoms which means that those living with HIV and their partners are able to to enjoy safe and worry-free sex! Whether you are a sero-discordant couple or a couple where both partners are living with HIV and are looking to protect each other from a different strain of the virus, you can still experience love as you have always wanted to. Not convinced yet? Check out these testimonials and dating sites for those living with HIV. And remember: your diagnosis shouldn't hold you back from finding and enjoying love! NO MATTER WHAT, you are still you and you ARE worth loving!

Happy Valentine's Day and Happy National Condom Day #StigmaWarriors! Please share this blog to show others that there is no shame about being HIV positive and that life doesn’t end with a diagnosis. On Valentine’s Day and every day, let’s all remember to bust myths, end stigma, love smart, love safe, and love love!