A new award recognizes longtime care providers, social workers and others in the HIV care field. Organized by the Ribbon Organizing Center HIV/Aging Positively (known as ROC4Aging+), Voices of Champions spotlights providers who have worked 15 years or more to elevate the health outcomes of people with HIV (PWH), particularly within marginalized communities. The awards are part of drug maker Gilead Science’s HIV Age Positively initiative.
“There’s so much history, and we don’t have a legacy that’s been written with the voices of those across multiple generations of HIV,” said Linda H Scruggs, co-executive director of the Ribbon, A Center of Excellence, a capacity building nonprofit that oversees the initiative. She said the award is both a celebration and a “time capsule” of champions who have sought to improve the lives of PWH across the decades while facing their own personal challenges.
“HIV has gone from the very horrid place that many of us remember in the early ’80s, and that sad place where we were struggling before the onset of antiretroviral drugs, today’s medications,” Scruggs said. Scruggs herself was diagnosed with HIV in 1990. “There are a number of providers that have been… champions, fighting this battle with us, [while] dealing with their own stigma.”
Scruggs added that many care providers who chose to work in HIV often faced personal and professional stigma, often to the detriment of their careers. The Voices of Champions awards acknowledge their sacrifice.
A look at the award recipients:
Marguerite Barber-Owens, MD, was driven to become one of the first HIV specialists in Alabama because of a near encounter she had. “My very dear friend who was in medical school with me passed away from HIV a short time after we vacationed in the Caribbean,” she says.
She tells POSITIVELY AWARE that she wants people with HIV to be treated with dignity and respect by the health care system, something the system doesn’t always do. She also feels that the community needs to be more open to HIV testing and education, and has taken that up as her personal cause.
“Early in my career, I felt inadequate because so many people had so many problems that had not been tested or treated,” she says.
Still in private practice in Montgomery although semi-retired now, she does clinical work one or two days a week. The rest of her professional time is focused on getting local providers to test for HIV. “It is sometimes challenging that medical providers will listen to scientific data, expert recommendations and even agree with each other, but that may not translate into action,” she says. “But it is a challenge that I am excited about.”
I may never be famous to the world, but I know that I have made a difference in the lives of many, and many have made a difference in my life.
Barber-Owens reminds up-and coming health practitioners that HIV is not over; there’s still a great need for service, and that the rewards are meaningful. “This is some of the most rewarding work I have done in my 41 years of being a provider,” she says. “It is also one of the most ever-changing, with new data coming out all the time, so it does require constant updating of knowledge. I may never be famous to the world, but I know that I have made a difference in the lives of many, and many have made a difference in my life.”
Ratonia C. Runnels, PhD, MSW, also had a personal connection to HIV early in life. She was diagnosed with HIV in 1994 as a 20-year-old student at the University of Texas at Austin. “At that time, the only personal experience I had with HIV/AIDS was my friend Terry, a gay man that we grew up with who belonged to my church and had AIDS,” she says. “I didn’t like it when people wouldn’t hug him or touch him. He deserved love, too. He died during my freshman year in college.”
Not long afterward, new, effective HIV medications became available.
“I began the then-new HAART therapies immediately and quickly began experiencing side effects, including lipodystrophy [a change in how the body produces, uses and stores fat]. I had no one to discuss these startling changes with. The following semester I took a social work elective where I was introduced to volunteer opportunities in the HIV community, as well as a support group for women living with HIV. I was 21 years old. The volunteer work set me on my career trajectory, and the support group changed my life. Since then, I have worked continuously to provide services and support to men and women living with HIV.”
An associate professor and director of field education at Texas Woman’s University, Runnels is concerned with raising HIV awareness, especially among the most affected populations. “Most people do not seek out information about HIV prevention and/or treatment until it impacts them, or someone close to them,” she says. “Our community events are often filled with individuals who already work in the field on some level, so much of it seems like preaching to the choir.”
Keeping up with new developments and maintaining an open mind are essential to education and outreach, she says. “Stay current on HIV-related news and research. We have to stay relevant and innovative to keep communities engaged. Stay open to new ways of doing things. Our motivation may start us in one direction, but things can change and change the course of our path. Also, it is important to establish good boundaries, and practice self-care daily. Recognize your value and importance in your corner of the world. It may not seem like you are making much difference, but your presence impacts others in ways you may never know.”
And don’t forget self-care. “Sometimes the line can get blurry when you are both a practitioner and patient, professional and client,” she says.
Dorcas Baker, RN, BSN, ACRN, CDP, MA, started as a research nurse in 1992. She answered a newspaper ad from the Johns Hopkins AIDS Clinical Trials Group (ACTG) looking for a full-time registered nurse with research experience.
“I was hired on the spot without research experience,” she says. “Little did I know that this position would impact me for the next 32 years.” For the next year, Baker visited prisons in Maryland, following people with HIV who were incarcerated on receiving antiretroviral treatment.
In 2004, she co-founded Older Women Embracing Life (OWEL), a support group of women aging with or impacted by HIV that also advocates and engages in public policy. OWEL’s prevention initiatives include its annual Testing for Turkeys Faith-Based Community HIV Testing Initiative, offering a frozen Thanksgiving turkey as an incentive for health screenings that include HIV, hepatitis C, blood pressure, podiatry and oral exam. “Our work for Testing for Turkeys has been published twice in the Journal of the Association of Nurses in AIDS Care [ANAC],” she says.
The following year Baker became site director for the MidAtlantic AIDS Education and Training Center (AETC) for Hopkins, where she serves within the School of Nursing, Center for Infectious Disease and Nursing Innovations. She started Hopkins’ annual AETC-sponsored Graying of HIV Symposium, now in its 19th year. “As regional coordinator, we are working to expand the capacity of HIV providers to integrate geriatric/aging assessments into their practice to improve the care for people over 50,” she says.
Baker hopes that her legacy will be, “that I helped to make a difference in some way, to improve the care and quality of life for someone.”
She said, “In the early days I asked, Are we prepared to care for an aging population? This is still the same question today, as we advocate to integrate HIV and aging and promote models of care to improve quality of life.”