As COVID-19 cases continue to rise, it is a sobering moment to recognize and take stock of another epidemic that we have been battling for nearly four decades. The first HIV Testing Day was 25 years ago and emphasized the opportunity for individuals to take control of their health by getting tested for HIV. It has become an annual reminder that the HIV epidemic is still with us. This year the SARS-CoV-2 pandemic threatens the ability of those with undiagnosed HIV and those with other serious conditions to take control of their health.
As an infectious disease physician specializing in HIV, I worry about the many individuals who do not have easy access to HIV testing now because testing venues have been shut down by the pandemic. Already too many of my patients do not discover they have HIV until they are ill with advanced disease or AIDS. In Georgia, the state with the highest rate of new cases in the U.S., nearly one-quarter of patients are diagnosed with AIDS within one year of being diagnosed with HIV.
This means they have been living, undiagnosed, with the virus for up to 10 years and have been unable to benefit from the HIV treatment that could have kept them healthy and prevented transmission to others. This is tragic given that a strong public health system with widespread testing could prevent death.
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.
Health Resources and Service Administration (HRSA) is continuing to work with RWHAP recipients, subrecipients, and providers to identify and share effective strategies to meet the unique needs of this growing population. As part of this effort, HRSA HAB is hosting its second national webinar in its series on Thursday June 25, 2020, from 1:30-3:30 PM ET, for RWHAP recipients, providers, and people with HIV to share important information about the healthcare and psychosocial needs of people with HIV aged 50 years and older in the RWHAP.
The webinar titled “Psychosocial and Support Needs for People with HIV who are Aging in the Ryan White HIV/AIDS Program” will feature an epidemiologist, social gerontologist/medical sociologist, HIV advocate, and an AIDS Education and Training Center director who will present on epidemiological data, the significance of psychosocial support services, the impact of isolationism and HIV sigma, and community services.
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.
Amid the coronavirus pandemic, the hope and promise for a healthier tomorrow might feel reminiscent of another virus — one that ravaged the LGBTQ community in the 1980s and beyond. But in the years since HIV transmission was at its height, has HIV/AIDS started to feel like a bygone disease despite a death toll that has soared over 32 million people worldwide? In the United States, it depends on who you ask. And if you’re part of the Latinx community, the answer is complicated.
Toward the end of 2019, The New York Times trumpeted a promising headline: “New York Says End of AIDS Epidemic Is Near.” The optimistic article sourced the Center for Disease Control (CDC)’s 2010-2016 findings, that rates of infection among gay and bisexual men have remained stable, and that, per Governor Andrew Cuomo, New York is on track to end the AIDS epidemic in the state by the end of 2020.
But while most demographics have experienced a trend-setting decrease in infection rates, the CDC noted that for Hispanic/Latino men, “the annual number of HIV infections in 2016, compared with 2010, increased,” and that during those years, the infection rates for this demographic were “4.3 times that for white males.”
With extensive and varied work, healthcare advocates and community leaders are spearheading efforts across the country to tackle HIV prevention and awareness for the Latinx community. But for many, it’s still an uphill battle.
“I will say I’m proud to be there for them,” says Danny Ochoa of his community. A gay man living with HIV, Ochoa is a Prevention Intervention Specialist in the Community Health Department at Gay Men’s Health Crisis (GMHC). A leader in HIV/AIDS prevention, care and advocacy, GMHC’s mission has evolved since its 1982 founding to recognize the importance of inclusion and diversity and has now become a haven for the urban queer Latinx populations. This resource can be just as vital as hospitals and medical centers.
As clinics and health departments across the country have shuttered during the coronavirus pandemic, the nation’s roughly 2,200 disease detectives, the so-called “contact tracers” of infectious disease outbreaks, have been re-deployed to track where cases of COVID-19 — the disease caused by the novel coronavirus — are spreading, to try to stop those outbreaks in their tracks. It’s a necessary shift, but one that may have serious, long-term impacts for the country’s sexual health, and for President Trump’s year-and-a-half-old plan to “eliminate” HIV from the US by 2030.
[…] According to a recent NCSD survey of HIV and STD disease tracers around the country, 83% are forgoing their usual field visits as a result of this pandemic. Two-thirds of the country’s clinics (66%) have also reported decreases in health screenings and testing due to COVID-19.
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.