What is the significance of World AIDS Day?
While pondering this question, many memories came flooding back. As a medical student in 1985, I was given the option to go into the room of a patient with pneumonia who was infected with this new disease. “You don’t have to,” as at that time my attending wanted to protect me. Regardless, I gowned up, put on a mask and gloves, and went into the room with the rest of the team to see the patient, the first patient I saw with HIV/AIDS. We did not stay in the room long.
Also, as a medical student, while doing an away rotation in 1986, I was instructed by my attending to inform a dialysis patient, by myself, that his test came back positive, that he had AIDS. As a young, dutiful student, I did what I was told to do. The patient screamed and ran out of the room. I was mortified and still am to this day.
In the late 1980s, a friend shared that he had read the book And the Band Played On and said it was the most horrifying book he had ever read. Today it still sits on my shelf, unread.
In the early 1990s, I recall walking by a patient’s room and she called my name, “Dr. Jokela!” I went in to see her and try as hard as I could, I did not recognize her. “Julie” was emaciated and did not look like the person I remembered. She had advanced HIV/AIDS and disseminated Mycobacterium avium infection. She was my age and died a week later.
In this era, Dr. Tony Fauci was our physician hero. Dr. Fauci worked with the AIDS-activist community (which was unheard of) and pushed to expand access to clinical trials and to fast-track new drugs. Dr. C. Everett Koop, as surgeon general, promoted information and education, because “we have no cure and no vaccine on the horizon” and forcefully spoke out, especially towards the end of his term.
And then, in the mid-1990s, protease inhibitors came on the scene and HIV treatment forever changed. Established in 2003, PEPFAR became the most impactful program on any single disease in history, saving 26 million lives and preventing millions of infections worldwide.
I reflect on my patient “Mike” who moved back home to Illinois in the late 1990s “to die,” but surprisingly to him, he did not. “Now what do I do?” he asked. When discussing with him “undetectable = untransmittable,” he looked at me in amazement. “Really? You’re kidding, right?” This was earth-shattering, life-changing news for him. For decades, he had thought of himself as a pariah, and with this news, that image began to change.
And my thoughts turn to my patient “Justin” who together with his partner were active in their church. They spearheaded their church’s food pantry and volunteered countless hours at holiday meals and delivering meals to homebound church members. They were beloved. Justin passed away in his 80s of heart disease and had lived for more than 40 years with HIV.
I think of “David” who eventually began taking his antivirals as prescribed. He always kept his appointments and told me the truth about his adherence, or lack thereof. He volunteered at a local community center and enjoyed visiting with visitors and staff. His life was turning around. Sadly, in his 60s, after more than 30 years with HIV, he was in the wrong place at the wrong time and died from a gunshot wound. The community center was devastated.
We have come so far, with a multitude of antivirals which now include injectable medications that prevent HIV infection. We have sophisticated treatment guidelines, derived from numerous clinical trials and most importantly, the volunteers who participated in these trials. The goal, of course, is to end the HIV epidemic, which still infects tens of thousands in the U.S. and more than one million around the globe every year.
Beginning in the 1980s, in the setting of overwhelming discrimination and disregard, a way forward was determinedly and righteously forged, and lives have been saved. People like Mike, Justin, and David, and millions like them, now can lead normal, long lives, and positively impact their communities and those around them.
This is the significance of World AIDS Day, and this is why we celebrate it. We celebrate and hold close the principles that inspired people from all walks of life to combat the harms and horrors of HIV/AIDS. And we continue to deeply mourn those we lost.
The early days of HIV were terrifying and heart-breaking for so many reasons. We are grateful those days are now history. We must commit ourselves to ensure they never return, nor the circumstances that permitted them, for any infection or diagnosis.
We uphold our oath. And someday, I will read And the Band Played On.
Janet A. Jokela, MD, MPH, completed her term as ACP Treasurer at IM 2025. She serves as professor and senior associate dean of engagement at the Carle Illinois College of Medicine, Urbana, IL. She may be reached on BlueSky @drjanetj.bsky.social.
The American College of Physicians is the largest medical specialty organization in the United States, boasting members in over 145 countries worldwide. ACP’s membership encompasses 163,000 internal medicine physicians, related subspecialists, and medical students. Internal medicine physicians are specialists who utilize scientific knowledge and clinical expertise for diagnosing, treating, and providing compassionate care to adults, spanning from those in good health to individuals with complex illnesses. Stay connected with ACP on X @ACPIMPhysicians, Facebook, LinkedIn, and Instagram @acpimphysicians.
