A message from HIV.gov and ADM Brett Giroir, MD, Assistant Secretary for Health, U.S. Department of Health and Human Services…
In the 25 years since National HIV Testing Day (NHTD) was first observed on June 27th, we’ve made remarkable progress on HIV prevention, treatment, and research—but people who haven’t been tested will not know their status or how to benefit from prevention tools or HIV medications.
So the theme for this year’s observance—“Knowing”—is particularly important. It means:
I invite you to watch this message from ADM Brett Giroir, MD, Assistant Secretary for Health, U.S. Department of Health and Human Services, about these important aspects of Knowing.
The only way to know your HIV status is to get tested—and taking that test is a key step down the path toward ending the HIV epidemic in the United States.
That’s the path we are walking with the Ending the HIV Epidemic: A Plan for America (EHE) initiative, which aims to achieve epidemic control in our nation within 10 years. How? By decreasing the number of new HIV transmissions by at least 90% by 2030. The first pillar of EHE is to diagnose all people with HIV as early as possible.
The history of HIV/AIDS is a long and complicated one. There are many conflicting details in its story, and each life touched by the virus has a complicated and beautiful story of their own. In this synopsis, we have tried our best to highlight the most crucial parts of the story of HIV in America, understanding that this is a near-impossible task. HIV stands out from many diseases, because today we are still without a cure—but also, perhaps more importantly, because the AIDS pandemic is now embedded into the histories and cultures of queer people, people of color, creative communities, and dozens of fringe and subculture groups; AIDS has become part of our own personal histories.
Scientists suggest that traces of HIV date as far back as 1931 in the Democratic Republic of Congo. Before the 1980s, researchers estimate that about 100,000 to 300,000 people contracted HIV around the world.
In 1969, a Black teenager in St. Louis named Robert Rayford died of an illness that baffled his doctors. Officially, his death was the result of pneumonia. Robert Rayford, also known as “Robbie” or “Bobbie,” was said to have been shy and socially awkward and possibly had a cognitive disability. Little is known about the young man’s life. His doctors have stated that Rayford often avoided or refused to share much information about his life or family; however, it has been suggested that he contracted an HIV-like virus through sexual assault. Nineteen years later, in 1988, molecular biologists at Tulane University in New Orleans tested samples of his frozen tissue and found evidence of HIV, although the lack of 100% certainty of these test results is still talked about in the scientific and public health communities. Still, Robert Rayford is often remembered as the first known case and fatality of HIV-1 in the United States.
Many people in the LGBT community and health care workers anecdotally say they were beginning to see people die mysteriously in the 1970s, from what they now believe were HIV-related illnesses. But it was on June 5, 1981, that the Centers for Disease Control and Prevention (CDC) noted in its Morbidity and Mortality Weekly Report the appearance of a rare pneumonia in five young gay men in Los Angeles. Additionally, the men, all of whom would die, showed compromised immune systems. Across the country, a New York dermatologist tipped the CDC to a baffling spate of cases of an aggressive cancer called Kaposi’s sarcoma. Each of these cases appeared in gay men. Newspapers and other media outlets began to report about a “gay men’s pneumonia” and “possible gay cancer.” Headlines across the United States and, shortly thereafter, the world, claimed a new “Gay Cancer” was responsible for the otherwise uncertain cause of death of multiple gay and bisexual men. At the close of 1981, there were 270 reported cases of severe immune deficiency among gay men, and 121 of them had already died. Uncertainty lead to fear in queer communities; acknowledgement and, therefore, action were almost nonexistent in mainstream culture and communities.
In collaboration with Kaiser Family Foundation (KFF), NASTAD will host a webinar series titled Effectively Engaging Community in the Ending the HIV Epidemic Process Through Digital Technology. The series aims to support health departments and community-based organizations (CBOs) to accelerate jurisdictional efforts toward Ending the HIV Epidemic.
With the current challenges presented by COVID-19 and with expanded opportunities to use digital technology (e.g., internet, social media, virtual meeting spaces, digital devices) this series will explore the relationship between community engagement and digital technology, and how it can be leveraged to expand HIV prevention and care planning and service delivery.
This series will present on digital activities and tools from the perspectives of EHE HIV community planning, HIV service delivery, and determining where to direct funding. NASTAD, KFF, and peer jurisdictions present this information across three webinars:
Learning How to Apply Digital Technology to HIV Community Planning
Date: June 25, 2020 at 3:00 – 4:00 PM EDT
Exploring Digital Resources and Strategies to Expand HIV Services to Community
Date: July 14, 2020 at 2:00 – 3:00 PM EDT
Determining the Best Monetary Value When Using Digital Technology
To register for the webinar series, please click here. Additional details about the webinars and presenters will follow. For questions or to learn more about the series, please contact Kristina Santana.
By the end of 1984, AIDS had already ravaged the United States for a few years, affecting at least 7,700 people and killing more than 3,500. Scientists had identified the cause of AIDS—HIV—and the U.S. Centers for Disease Control and Prevention (CDC) identified all of its major transmission routes.
Yet, U.S. leaders had remained largely silent and unresponsive to the health emergency. And it wasn’t until September 1985, four years after the crisis began, that President Ronald Reagan first publicly mentioned AIDS.
But by then, AIDS was already a full-blown epidemic.
HIV originated in 1920 in Kinshasa, Democratic Republic of Congo. It spread to Haiti and the Caribbean before jumping to New York City around 1970 and California within the decade.
Health officials first became aware of AIDS in the summer of 1981. Young and otherwise healthy gay men in Los Angeles and New York began getting sick and dying of unusual illnesses normally associated with people with weakened immune systems.
It didn’t take long for fear of the “gay plague” to spread quickly among the gay community. Beyond the mortal danger from the disease, they also dealt with potentially being “outed” as homosexual if they had AIDS or an illness resembling it.
In fall 1982, the CDC described the disease as AIDS for the first time. Despite the growing cases and a new name, news outlets struggled with the disease, or at least how to cover it—some even shied away from giving it too much attention. Though the New York Times initially reported on the mysterious illnesses in July 1981, it would take almost two years before the prestigious paper gave AIDS front-page space on May 25, 1983. By that time, almost 600 people had died from it.
David W. Dunlap, a reporter in the Metro section at the time, told the New York Times Style Magazine: “There were strong messages that you got that were not written on any whiteboard. You knew to avoid it. It was a self-reinforcing edict: Don’t write about queers.”
The core of NASTAD’s mission is an unwavering commitment to social justice. We recognize that we will not end the HIV and hepatitis epidemics and related syndemics without dismantling the systems of oppression that fuel racial disparities in access and outcomes. We prioritize fighting injustices where we see them, and we value diversity and inclusivity in all forms. In 2016, NASTAD released the “NASTAD’s Commitment to Black Lives” statement, which stated, “racism has imprinted a legacy of systemic injustices against Black people in the United States. The pervasive undercurrent of white privilege and supremacy exists in the form of obstructed economic, political, and social power for Black people in America.” Four years later, we amplify this message more than ever.
The Presidential Advisory Council on HIV/AIDS (PACHA) will hold its 67th full Council meeting virtually on Monday, June 1 and Tuesday, June 2, 2020. Due to the coronavirus (COVID-19), the council members will each participate from home, presenters will join remotely, and stakeholders can view the meeting via livestream online.
During the meeting, the Council will:
Welcome a new member;
Discuss the impact of COVID-19 on the HIV response;
Engage with federal HIV leaders on the status of the Ending the HIV Epidemic initiative and the Federal responses to prevention and care access challenges resulting from COVID-19; and
Hear perspectives and lessons learned on HIV and COVID-19 from PEPFAR.
The Council will also hear public comments during the meeting. Individuals wishing to make a public comment must pre-register by emailing PACHA@hhs.gov. If you do not pre-register for public comment but decide you would like to submit a statement, please email your written statement to PACHA@hhs.gov by close of business Tuesday, June 9, 2020.
The meeting convenes on Monday, June 1 and Tuesday, June 2, 2020 from 2:00 PM to 5:00 PM (ET) each day. It will be livestreamed at www.hhs.gov/live. To register, please email Caroline Talev at PACHA@hhs.gov.
Learn more about PACHA on HIV.gov, where you can find links to previous meeting summaries and slides, including those from the February 2020 PACHA meeting held in Washington, DC.
August “Buzz” Pusateri played an integral role in the Pitt Men’s Study, a confidential research study of the natural history of HIV and AIDS. Not only did he believe in the importance of recruiting volunteers to help further research, he was one of the project’s first volunteers. Twice a year, sometimes more, Pusateri visited the clinic to give blood and answer detailed questions about his life. He also participated in special studies.
“Buzz got it across to the community … that this had to be done for them to defeat this epidemic of AIDS,” said Charles Rinaldo, a scientist and investigator of the Pitt Men’s Study. “He was central to it. He was always there. He was a tough guy, too.”
Pusateri, a long-term HIV survivor, died on Monday, according to a tribute on the Pitt Men’s Study website. He was 81. Pusateri was a well-known community activist, a founding member of the Pitt Men’s Study community advisory board, and a volunteer with Shepherd Wellness Community. He had been involved in the Pitt Men’s Study since recruitment began in 1984.
“It’s just a horrible loss,” Rinaldo said. “He was our go-to person as far as connecting with the community. He was number one in making sure the community understood.”
Pusateri tested positive for HIV more than 30 years ago. He told the Tribune-Review in 2015 “it’s been an up-and-down battle.”
“Really, with this HIV, you never know what’s going to happen to you,” Pusateri said in 2015.
The Pittsburgh resident was the longest serving chair of the community advisory board, the direct link between the researchers and LGBTQ community, Rinaldo said.
More than 160,000 Americans with HIV are unaware they have the virus because they have not been tested and diagnosed. Yet we know that early diagnosis and treatment with ART are associated with better health outcomes for those with HIV. There are profound prevention benefits as well—a CDC analysis found that the nearly 15% of people with HIV whose infections are undiagnosed account for 38% of all HIV transmissions in the U.S. By finding ways to help more people get tested, we can prolong lives and prevent further transmissions.
That’s why HIV testing is a key strategy in Ending the HIV Epidemic: A Plan for America (EHE), the nation’s plan to reduce new HIV infections in the U.S. by 75% by 2025 and by 90% by 2030. The first of the Plan’s four strategies calls for diagnosing all people with HIV as early as possible after infection so they can begin care and treatment that can protect their health and prevent transmission of the virus to their partners.
Stakeholders across the country are exploring innovative ways to pursue this EHE strategy and seeking to make HIV testing more available to previously unreached populations, such as those who live far from the nearest testing site or who are concerned about confidentiality. One innovative model includes HIV self-testing programs, sometimes called “home HIV test giveaways.” These are programs in which city or state health departments advertise free self-test kits via the internet and/or dating apps, and distribute the kits by mail so that users can perform their own HIV tests in private.
Biomedical advances against HIV since the dawn of the epidemic have been nothing short of astonishing. An almost always fatal disease is now, for those with the privilege of access to treatment, a manageable chronic illness, treated with a single daily pill. A person who acquires HIV today has every reason to expect to live a normal life span.
Yet with such astonishing success in treatment, why is HIV stigma worse today than ever before? Why do so many long-term survivors, including many who were exceptionally open about their HIV-positive status for years, find they must now keep it a secret, sometimes going deeply into closets they thought they had left for good years ago?
Many people—especially those who do not have HIV—find these questions startling. That’s because they remember the days when one had to wear a spacesuit to visit a person with AIDS in a hospital or was afraid to eat in a restaurant with gay waiters or refused to touch a person they thought might have the virus.
The Centers for Disease Control and Prevention (CDC) released Frequently Asked Questions (FAQs) about HIV and coronavirus disease 2019 (COVID-19). The new resource addresses concerns related to COVID-19 and HIV and highlights how people with HIV can protect their health.
COVID-19 is a respiratory infection that can spread from person to person. Symptoms of COVID-19 include fever, cough, and shortness of breath. While most people have mild symptoms, some people are at higher risk of getting very sick from COVID-19. People at higher risk include older adults and people with serious underlying medical conditions like heart disease, diabetes, and lung disease.
In the United States, nearly half of people with diagnosed HIV are aged 50 and older. People with HIV also have higher rates of chronic heart and lung disease. Like other respiratory infections among people with HIV, the risk of getting very sick is greatest in people with a low CD4 cell count and people not on HIV treatment. Encouraging people with HIV to stay on treatment and take preventative actions will play an essential role in protecting the health and well-being of those who are at higher risk of serious illness from COVID-19.
People who are taking medicine to treat (ART) or prevent (PrEP) HIV should stick to their treatment plan, continue taking their medicine consistently, and follow the advice of their health care provider. Some types of HIV medications are being evaluated in clinical trials to treat COVID-19, but there are no data available yet showing that these drugs treat COVID-19. People who develop symptoms that could be consistent with COVID-19 should talk to their health care provider about how to get evaluated. Please visit the COVID-19 website to learn more about how to prevent the spread of COVID-19.
Furthermore, some of CDC’s recommendations to help people with HIV protect themselves from COVID-19 include:
Having at least a 30-day supply of HIV medicine available.
Avoiding close contact with people who are sick.
Practicing good hand washing.
Avoiding large crowds and gatherings.
Avoiding non-essential travel.
Following recommendations made by local public health officials.
Establishing a clinical care plan to communicate with health care providers online or by phone.
We encourage you to review the FAQs and share these resources with your colleagues, friends, and family.
While we remain committed to ending the HIV epidemic in the United States, the response to COVID-19 has been a top priority for many people across the world. Thank you for your unwavering commitment to supporting this vital response. Together, we can make sure our families, friends, and communities have the information and resources they need to stay healthy and protect themselves from COVID-19.
Eugene McCray, MD
Division of HIV/AIDS Prevention
National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention
Centers for Disease Control and Prevention www.cdc.gov/hiv