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The Legacy

Baby Nicky (1990).jpg

Baby Nicky


The first reports of HIV infection in children in the United States emerged in December 1982, when the Centers for Disease Control described four children under two years with unexplained immunodeficiency and opportunistic infections.

In 1991, Steven and Roger began caring for sixth-month-old Nicky. Her immune system was fragile, and she did not survive her battle with HIV/AIDS.

In 2020, 37.7 million [30.2 million–45.1 million] people were living with HIV. 36.0 million [28.9 million–43.2 million] adults. 1.7 million [1.2 million–2.2 million] children (0–14 years). 53% of all people living with HIV were women and girls. AIDS orphans: 16.5 million children worldwide have lost their mother, father, or both parents due to HIV / AIDS. Around 13.7 million AIDS orphans live in sub-Saharan Africa alone. In 1994, the mortality rate for HIV-infected children and youth younger than 21 years of age in the United States was 7.2 deaths per 100 person-years (a rate based on the number of children in the study and the total number of years each child was followed).


Glenn (1989).jpg

The Bath


A good friend, Glenn, was diagnosed with HIV/AIDS in 1989 and contracted an aggressive form of Kaposi Sarcoma (cancer tumors that appear as purple patches on the skin). I asked him if I could spend a day with him, and he permitted me to photograph him as he took his ritualistic morning bath. As he sponged, he said, “Look, Tomas, I’m washing my lesions away.” The power of the photographic eye allowed me to capture a most intimate human moment. Susan Sontag states, “to take a photograph is to participate in another person's mortality, vulnerability, mutability. Precisely by slicing out this moment and freezing it, all photographs testify to time's relentless melt.”

·    The first cases of what would later become known as AIDS were reported in the United States (U.S.) in June of 1981. Today, more than 1.2 million people are living with HIV in the U.S., and more than 35,000 new infections are each year. 2 More than 700,000 people in the U.S. have died from HIV-related illness.

HIV disproportionately impacts specific populations, particularly racial and ethnic minorities, gay and bisexual men, and other men who have sex with men and transgender women.

·    HIV testing is essential for both treatment and prevention efforts. Yet, 13% of those with HIV are unaware they are infected.


·    28.2 million people were accessing antiretroviral therapy as of 30 June 2021.

·    37.7 million [30.2 million–45.1 million] people globally were living with HIV in 2020.

·    1.5 million [1.0 million–2.0 million] people became newly infected with HIV in 2020.

·    680 000 [480 000–1.0 million] people died from AIDS-related illnesses in 2020. 

·    79.3 million [55.9 million–110 million] people have become infected with HIV since the start of the epidemic.

36.3 million [27.2 million–47.8 million] people have died from AIDS-related illnesses since the start of the epidemic.

The Cost of HIV Medication

According to the U.S. Centers for Disease Control and Prevention (CDC), 1.2 million people living with HIV (PLWH) in the United States. While scientific advances have made it easier to prevent and treat HIV, there remains no vaccine or cure, and tens of thousands of people contract HIV every year.

HIV treatments can be expensive. HIV care involves a type of medication called antiretroviral therapy (ART) and regular visits with a doctor. One study estimated that the costs of this care could run anywhere between $1,800 to $4,500 each month during a person’s lifetime. More potent drugs given through a shot instead of in a pill can cost about $9,000 a month.

The U.S. government investment in the domestic response to HIV has risen to more than $28 billion per year.

Recently in Texas, a federal judge has ruled that businesses are not required to cover a medication that prevents HIV infection. That medication is best known as PrEP. Experts say this decision could also jeopardize access to many other preventative health services that the Affordable Care Act requires employers to cover. 

Turning the tide against HIV/AIDS and finding a cure will be challenging with insufficient funding. In addition, ideological and religious opposition to policies leads to stigma and discrimination. Finding a cure for HIV/AIDS will be hampered, and new infections may arise.


Human Rights Campaign

Kaiser Foundation

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