This past June marked a somber anniversary—40 years since the first reported cases of what would become known as Acquired Immunodeficency Syndrome, also known as AIDS. Since then, more than 32 million people worldwide have died from the disease, caused by the human immunodeficiency virus (HIV). Globally, 38 million people are currently living with HIV, including an estimated 1.1 million Americans.
In the past 40 years, we’ve learned a tremendous amount about HIV and AIDS, and scientific breakthroughs for prevention and treatment have been discovered, such as PrEP (pre-exposure prophylaxis) and antiretroviral therapy (ART). Still, HIV/AIDS remains a public health emergency. This is especially the case now, as the COVID-19 pandemic has disrupted HIV programming and research.
In 2019, however, the United States announced a goal to decrease the number of HIV infections by 90 percent by 2030. To support this goal, which would effectively end the HIV epidemic in the United States, agencies across the U.S. Department of Health and Human Services (HHS) developed a plan that “leverages critical scientific advances in HIV prevention, diagnosis, treatment, and outbreak response by coordinating the highly successful programs, resources, and infrastructure of many HHS agencies and offices.” Beyond this important cross-agency work, HHS also calls the plan a “whole-of-society initiative”—one that includes partners from all sectors.
Community-based organizations (CBOs), in particular, play an important role and must be supported as they work tirelessly to educate at-risk communities, prevent HIV transmission, increase testing, and improve health outcomes and quality of life for people living with HIV.
Long before HIV and AIDS were addressed in the medical setting, community organizations were on the ground providing essential services to those impacted—and ever since, they’ve been instrumental in the fight against HIV
The early days of the HIV/AIDS epidemic
On June 5, 1981, the Centers for Disease Control and Prevention (CDC) reported a mysterious lung infection “in five young, previously healthy gay men in Los Angeles,” marking the first cases of what would become known as AIDS. That same day, a dermatologist reported a rare and aggressive form of cancer impacting clusters of gay men in New York and California. Within days, additional clusters of lung infections and cancer among gay men were reported across the country.
Two months after the first cases were reported by the CDC, 80 gay men held a meeting in New York City to discuss the new infection and cancer clusters. Attendees raised over $6,600 for research — “essentially the only new money, public or private, [raised] to fight the epidemic for the remainder of the year.” Six men from that initial meeting organized the Gay Men’s Health Crisis (GMHC), now considered the oldest AIDS organization.
GMHC’s first major initiative was a telephone hotline, set up in the home of a volunteer to answer questions about the growing health crisis. On the first night of its operation, the hotline received 100 calls. Quickly, volunteers identified the need for more complex legal or medical support, so they created their own Patient Services Division. They trained counselors, advocates, and nursing volunteers to care for those who fell ill.
In the early days of the HIV/AIDS crisis, as infections rose, so did fear and misinformation. The government and healthcare system offered no medical or financial support, so communities all across the country organized their own services to care for people who became infected. When medical staff refused to touch patients for fear of infection, CBOs provided in-clinic care. When AIDS-impacted people were threatened with eviction or fired from their jobs, CBOs provided legal and financial support.
Supporting the work of CBOs
CBOs work intimately in the community to provide a wide range of services, including public health resources, emergency services, and free or low-cost health care, making them well-equipped to screen for HIV and implement preventative measures.
Some of their notable services include:
- Culturally relevant education
- Prevention information
- Harm reduction counseling
- HIV testing
- Information about PrEP
- Access to prevention resources, such as sterile syringes or condoms
- Critical care and essential services to people living with HIV
- Housing, food, and job assistance
CBOs have always been at the forefront of the fight against HIV and AIDS, providing critical services to those impacted, but these organizations are working beyond capacity and on limited resources as the threat of COVID-19 continues to rise.
While a cure for HIV is on the horizon, it’s not yet a reality — and until it is, we need government agencies, medical professionals, social workers, and community organizations to work in tandem to ensure that screenings, interventions, treatments, and ongoing care are made possible. We also need to work together to put an end to the stigma that has long been associated with HIV.
At Healthify, powered by WellSky, we’re dedicated to ensuring that no one’s health is hindered by their needs. By building networks of healthcare-community partners, we make social services more accessible to populations in need. Learn more about our work here.