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.
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.
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!
