Two women inspired Jolene Noel-Connor, RN, to dedicate her life’s work to treating patients at the AIDS Clinical Trials Group’s (ACTG) site at Columbia University – her mother and the first heterosexual woman diagnosed with HIV in the United States.
“My mother was sick as a child and became sicker as an adult. As long as I can remember, I told my parents I was going to be a nurse,” Noel-Connor says. “Then in 1980, a young, female nursing student who was six months from graduation came in and was later diagnosed with GRID (Gay Related-Immune Deficiency). There was no HIV antibody test in the early 1980s at the beginning of the epidemic and for several years later. We realized that our institution was treating the first heterosexual case of the virus. Staff would leave her tray of food on the floor outside of her room. They were scared to get too close to her. The CDC (Centers for Disease Control and Prevention) and other infectious disease specialists from across the country came to New York to see her. Everyone wondered how did this straight, married, mother of two with no history of drug use get this? I cared for her until she died and she told me ‘Jolene, you cannot ever leave nursing.’ Then the infectious diseases physician I worked with, Dr. Jay Dobkin, said the same thing to me. I have been here ever since.”
As a nurse and Clinical Trials Unit (CTU) Coordinator at the ACTG’s HIV Prevention and Treatment Clinical Research Site (CRS) at Columbia University Medical Center in New York City, Noel-Connor splits her time recruiting patients for ACTG clinical research trials and treating patients already on study. There are seven active ACTG studies currently underway at the Columbia site. Noel-Connor says intensive studies like A5294, which is exploring a new treatment regimen for people co-infected with HIV and Hepatitis C virus (HCV), take up the most of her time.
“When I see patients on study, I review their blood work and adjust their medications if needed,” Noel-Connor says. “I encourage our patients to see their nutritionist, social worker and mental health provider while receiving HIV/HCV treatment. In some studies, we see the same patients for years. You develop a relationship with them and they see you as an advocate. My patients drop-in and ask for help with social services or immigration issues. I take the time to steer them to the right provider or agency to get their questions answered. It ends up being a full day!”
Being a part of HIV research since the 1980s, Noel-Connor has been a part of many “firsts” in addition to caring for the first heterosexual female living with HIV. She helped open the ACTG’s site in Harlem in 1988. She was the first nurse and first African American face and voice of the National Institutes of Health’s (NIH) first public service announcement about HIV.
“That campaign included television, radio and print ads and ran for five years across the country,” Noel-Connors says. “I would walk to work in New York and people would stop me on the street and say they recognized me from it.”
Former U.S. President Ronald Reagan sent two physicians up to New York City in the 1980s to trail Noel-Connors and report back to the Department of Health and Human Services (DHHS) about the AIDS epidemic.
“One of the physicians knew Dr. Dobkin and that’s why they came to Columbia and followed me for two weeks,” Noel-Connor says. “I had the opportunity to show them our hospital, which served a predominately black community. They saw patients languishing in their beds because no one knew what was going on at that time. Across the US, there was this fear that you could catch something. Folks really suffered in more ways than one during that time. The two physicians spoke with our patients and the patients really appreciated it. A few weeks after they left and went back to Washington, DC, I received a letter from the White House thanking me for my time and telling me that the visit allowed them to make recommendations to the DHHS. So I knew then that the visit had definitely been worth it.”
In 1989, Noel-Connor was invited to Washington, DC, to receive the highest civilian award from the DHHS for her work treating people living with HIV.
“Jolene is both a mother and a nurse to the study participants,” says Steven Chang, a nurse practitioner and Coordinator of the Columbia site. “She knows what is going on in their lives and pays special attention to the stressors that could impact their care and treatment. She has often gone above and beyond for her participants. Just as one small example, I remember when she delivered food to a participant’s home on Thanksgiving. She also makes sure that all our clinical studies are conducted with the highest ethics, ensuring a thorough consent process making sure each and every participant is fully aware of all the risks and benefits prior to their participation.”
Noel-Connor’s career is equal parts research and activism. She encourages people infected or affected by HIV to become involved with a clinical trial or an ACTG Community Advisory Board.
“The hundreds of thousands of people on medication today can thank those who were first infected for coming forward and paving the way for research and prolonging life,” she says. “But we are not finished and we still need the community’s involvement.”
Looking toward the future of HIV research, Noel-Connor says HIV and aging is an important area to tackle and she encourages her patients to proactively prepare for growing older with HIV.
“All these medications we have now are truly allowing people to live longer. I make sure our patients understand that they need to stay on top of all the things that come with aging, like watching their cholesterol as well as bone and kidney health,” she says. “Now that your HIV is in check, keep taking your medications and plan for the future. There is still life ahead.”