Published July 21, 2020
Joy Feldman’s older brother Jimmie was, she thinks, everybody’s favorite of the four siblings. He certainly was her favorite. Handsome, energetic, authentic, sensitive, smart, honest — Jimmie made fun happen, just by being present.
The story of how Jimmie lived his life is how Joy stays connected to his memory. The story of how she and her family cared for Jimmie at home until he succumbed to AIDS, is how Joy, a 1968 graduate of the UB School of Nursing, discovered her life’s work.
It begins with a young woman choosing a nursing career to complement her affinity for science and people -- a simple choice that led her to become a Navy nurse at the height of the Vietnam era and be at work for Planned Parenthood when the Roe v. Wade decision was announced—then raise two sons while teaching nursing students before acquiring a law degree while caring for her ailing brother.
Each era of Joy Feldman’s professional and personal life proved serendipitous for the avocation she would take up after Jimmie lost his life during the AIDS epidemic.
She first became aware of how health care providers discriminated against already marginalized populations as a nursing student.
While in New York, Joy earned a graduate degree from NYU to become a psychiatric clinical specialist and worked as a nurse educator for Planned Parenthood of New York City. She later returned to Buffalo to start her family and began teaching at Niagara University. She remained involved with Planned Parenthood as a board volunteer both locally and regionally, and in the mid-1980s, she co-authored a Planned Parenthood diversity manual aimed at better serving minority populations.
By 1987, Joy’s sons were in middle school, and she was a decade into an assistant professorship coordinating adult chronic illness courses at UB School of Nursing. Meanwhile, a new virus was exploding in urban centers, including in San Francisco, where Jimmie lived. It was understood that this human immunodeficiency virus was invariably fatal.
Within a few years, Jimmie was diagnosed.
“He said to me, ‘Joy, don’t worry. It’s going to be a chronic disease like diabetes, we’ll be fine,’” said Joy. “Jimmie turned out to be right, but the timeline was too slow for him.”
When his health declined, Jimmie came to live with Joy, her husband Andrew, and sons Matthew and Jason. As the entire family cared lovingly for Jimmie, Joy also experienced frustration while navigating the health care system as Jimmie’s primary caregiver.
“HIV was so stigmatized that it didn’t matter how beautiful a person Jimmie was, or how well-known in Buffalo Andy and I were, or how many medical professionals I knew. It didn’t help,” she remembered.
As someone who had spent her life in the health care field, this was a sobering realization.
Jimmie died in 1992. A few months later, the CEO of AIDS Community Services (the precursor to Buffalo-based Evergreen Health) invited Joy to sit on the nonprofit’s board.
“I thought about it,” she said, “and decided that people need to know the patient-side experience, and if I don’t accept his offer, they won’t hear it.”
All of Joy’s experience positioned her to become an advocate for patients who, like her brother, were failed by an inadequate health care system.
Evergreen Health was founded to deliver care for underserved and/or stigmatized individuals, beginning with HIV patients. Today, Evergreen supports those with multiple chronic diseases, mental health challenges and substance use issues; it provides a variety of services in addition to education, health promotion and disease-specific prevention programs from four facilities.
Joy finished law school in 1991 and became general counsel for a privately owned, multi-facility nursing home. Her experience there in operations and policymaking would prove useful for Evergreen’s evolution.
Evergreen become an Article 28-licensed facility in 1998 and waited two years for Medicaid reimbursement to start flowing. The organization was strapped for resources, and depended heavily on grant funding, while the services and numbers of patients steadily grew. Growing to include a pharmacy in 2012 revolutionized its services and financial health.
Today Evergreen serves more HIV negative patients than positive, thanks to widespread efforts to limit transmission of HIV. Evergreen operates a thriving primary care medical practice along with specialty services for LGBTQ, Hepatitis C, Transgender, suboxone, drug user health services, and the largest syringe exchange in New York (outside Manhattan).
Evergreen accomplishes this by focusing on serving people who are underserved and/or marginalized by mainstream health care, using the harm reduction model. In February, 2020, the organization applied to become a Federally Qualified Health Care Center “Look Alike” (FQHC LaL), a designation reserved for health care providers that serve the poor and underserved, and results in enhanced reimbursement. This step was taken to better secure the organization in these uncertain times of health care financing. As a feature of transitioning to become an FQHC LaL, the board was revised to consist of a majority of patients while also representing the demographics served.
Throughout her time volunteering for Evergreen, Joy has been involved in trainings, strategic planning, and Board oversight of a dynamic staff dedicated to growing a comprehensive model of “wrap-around” care that is unique to Western New York.
Though she is retired now from both the law and nursing, Joy continues to serve as Board Chair. One of the pleasures of her continued involvement with Evergreen is working alongside the exceptional Chief Executive Officer and President, Raymond Ganoe, and his remarkable staff. An additional pleasure is working with her son Matthew, who serves as general counsel for Evergreen Health, on some of the legal issues that arise for the organization. (Son Jason is also in the “family business,” working in infectious disease (including HIV) surveillance for the State of Washington Department of Health.)
Late this winter while hosting family in Florida, one of Joy’s houseguests saw a photo of Jimmie on prominent display. The conversation that followed was about love and loss, and then about the passion ignited in their family. What the Feldman family did for Jimmie — providing support and compassionate, high-quality care — became Joy’s life’s work, which continues on every day at Evergreen Health.