The first known cases of AIDS were reported in 1981. Though still a persistent public health challenge in the U.S. and across the globe, great strides have been made in combating the disease in the decades since. In fact, according to the current National HIV/AIDS Strategy, the U.S. has the opportunity to end the HIV epidemic by the year 2030 through a series of four targeted objectives.
The hopeful “Roadmap to End the Epidemic” builds on more than 40 years of lessons learned and progress hard-won by caregivers, health professionals, activists, and those infected with the disease, which has claimed the lives of more than 100,000 New Yorkers.
This World AIDS Day, United Hospital Fund reflects on its role in some of those pioneering efforts to tackle the early stages of this grave epidemic—and its ripple effects—in New York City.
Innovation in Early Days
Despite a limited knowledge of the disease and the best ways to address it in the early 1980s, United Hospital Fund did not hesitate to respond to the crisis as a strategic grantmaker.
UHF’s first AIDS-related grant was made in 1983 to help St. Vincent’s Hospital—located in Greenwich Village, in the epicenter of the epidemic—adapt its hospice program to the needs of terminally ill AIDS patients. Their needs differed from those of older people traditionally serviced by the hospice. Other early grants included Goldwater Memorial Hospital and St. Luke’s-Roosevelt Hospital, which both spearheaded early programs to recruit and train volunteers to work with AIDS patients when clinical options lagged behind the growing human needs.
But within just a few years—as more became known about HIV transmission and treatment—the emphasis of these efforts shifted “from the hospital to the community, from acute care to long-term care, from easing patients’ last days to helping them live longer, and from death and dying to education and prevention,” according to a 1991 UHF publication Shaping New York’s Health Care: A Report on Grantmaking. United Hospital Fund played an important role in developing these new models of care.
By 1987, UHF was one of the most significant AIDS grant-makers in the city and in the nation, the report noted.
“The pace of the Fund’s grantmaking activities quickened as scores of community-based organizations were formed in response to these new needs and as many established organizations revised their missions to encompass AIDS,” the report reads.
Care and Compassion
As with St. Luke’s, many of UHF’s AIDS-related grants helped health care institutions adapt both their services and volunteer programs to care for AIDS patients.
On the volunteer side, grant recipients included Goldwater Memorial Hospital for patients in terminal stages of illness, the borough-wide Bronx AIDS Volunteer Organization, and the Community Service Society, which trained senior citizens to support hospitalized children with HIV-related illnesses. These programs were seen as a “bright spot on the epidemic’s bleak horizon” for both patients and the volunteers, the grant report notes.
“Reaching out to others is a way of fighting back against despair, of declaring, in the words of one volunteer, ‘I will not watch silently on the sidelines while my people are devastated. Instead, I will do something that makes a difference to others,’” it reads. “As advocates and friends, volunteers complement the efforts of health care professionals while helping to breach the isolation that is so often part of the illness.”
When it came to clinical care, UHF steered grants to help develop new models of care, ensuring patients had what they needed.
For example, a series of UHF grants helped Village Nursing Home create the nation’s first integrated system of AIDS long-term care services, which included a day treatment center, a home health care agency, and a skilled nursing facility. The day treatment center alone provided everything from medical care, to support groups, pain management, substance use education, parenting workshops, and cooking classes for those living with AIDS.
Also a first for the nation, Beth Israel Medical Center used a UHF grant to develop a project focused on the impact of AIDS on healthy children. The project—which offered counseling and support to children of all ages—sparked tremendous interest from schools, hospitals, and health and mental health agencies.
Spreading the Word
An essential challenge of fighting the HIV/AIDS epidemic, which still exists today, is preventing transmission through public education.
One key group in this effort was The Black Leadership Commission on AIDS (BLCA), which was created in 1987 to confront the escalating spread of HIV infection in New York City’s Black community. UHF, who made multiple grants to the group, first partnered with the commission in 1989 to help engage the city’s Black churches.
The Black church project—which included a “theological position paper” on AIDS, sermon series, and more—eventually became a national model. With the help of the UHF grant, BLCA held a conference for church representatives from across the country and created workshops to help other churches develop their own service programs for people with AIDS and their families.
Another critical but difficult goal of early public education campaigns was to spread awareness among adolescents, who were at higher risk for HIV infection but often harder to reach through traditional channels.
To this end, UHF provided a grant to the Adolescent Health Center of Mount Sinai Medical Center to develop its award-winning AIDS Prevention and Treatment program. The project included training adolescents to be peer educators, community and street outreach, and a creative teen theater group that tackled sexuality, homophobia, sexually transmitted diseases, and HIV in their shows.
Public Policy
On a larger scale, UHF’s grant-making also supported early AIDS public policy and research efforts.
Among these was a grant that helped establish the Citizens Commission on AIDS for New York City and Northern New Jersey, which aimed to stimulate private sector leadership on AIDS-related issues. The commission issued four major reports focusing on the workplace, drug use, access to care, and prevention and education. Notably, their report, “AIDS: Ten Principles for the Workplace,” became the gold standard in workplaces across the country to help protect both people living with HIV and their colleagues. In addition to UHF grants, staff served on city commissions to shape policy and services options.
UHF also supported AIDS-related studies at Coler Memorial Hospital, Mount Sinai Medical Center, and the New York City Task Force on Single-Disease Hospitals. Plus, grants to The Citizens Commission on AIDS helped the group urge government officials to help pay for the epidemic’s larger impact on health care and social services.
In addition to its grantmaking efforts, UHF authored several important publications during its early AIDS work. Among these is the 1986 monograph, AIDS, Public Policy Dimensions, which is viewed as the first public policy book on AIDS and was based on a two-day conference in New York City, co-sponsored with the University of California, San Fransisco. Other significant publications include Simple Acts of Kindness: Volunteering in the Age of AIDS, which included an accompanying video, and several works by UHF Senior Fellow and former Families and Health Care Project Director Carol Levine focusing on orphans of the epidemic and other vulnerable children affected by HIV.
Sustained Support
In all, UHF awarded nearly $3 million in HIV and AIDS-related grants during the first decade of the epidemic. But the work did not stop there. Even as AIDS passed its peak in the U.S. in 1995, UHF would continue to support the important work of caring for people living with HIV and preventing new transmissions. In the late 1990s and early 2000s, grants went toward adjusting HIV care to new state and federal guidelines, assisting with medication management, and confronting barriers to equitable services and outcomes. To be even more strategic, UHF joined with other funders to support the New York City AIDS Fund and chaired its grantmaking committee for over 25 years, awarding more than $23 million in grants supporting services, prevention, and advocacy.
Over the decades, UHF’s work has shifted from grantmaking to research, public policy analysis, and transforming care on the frontlines. Still, a total of 140 HIV and AIDS-related grants totaling nearly $6 million were given between 1983 and 2014.
As the pace of the new infections slowed, and people with HIV in care and treatment are living longer, healthier lives, the focus has shifted once again to ensuring these outcomes are equitable for all. Reducing HIV-related disparities and health inequities is one of the four goals for the current National HIV/AIDS Strategy.