Can you recall the most remarkable birthday gift you ever received? On a recent birthday, I took note of an e-mail message from the current director of the Program for Children With AIDS, which I headed at the dawn of my career amid the agonizing depths of the HIV epidemic, which exacted a particularly devastating toll on young children and families in the 1980s and 1990s. At the time, there appeared no way to stem the tide of new perinatal and blood-borne infections. The e-mail from the director said, “We are phasing out the program since the remaining patients have transitioned to adult care. We are planning a celebration dinner and wondering if you would be willing to speak about your experience here. I really hope that you can.”
Overcome with emotion, I pondered the uniqueness of this request. Medical centers host galas to hail program openings, but how exceptional to fete a closing! Having spoken at innumerable celebrations, I could think of none more worthy of profound commemoration, yet how does one find words? At that moment, an old, familiar theme of that earlier era echoed back to mind.
The blockbuster Broadway musical Rent portrays 1 year in the lives of friends in New York City who face poverty, eviction, and HIV infection at a time when azidothymidine (AZT) was the only treatment. In the hit song “Seasons of Love,” the cast confronts the age-old question, “How do we measure a year in the life?” According to the lyrics, 1 answer is, “Five hundred twenty-five thousand six hundred minutes.”
By that accounting, >19 447 200 minutes have passed since June 5, 1981, when the US Centers for Disease Control and Prevention issued its first report of 5 young men who were treated in Los Angeles for a rare form of opportunistic pneumonia due to what was then known as Pneumocystis carinii, which was the first signal of a global pandemic of what became known 1 year later as AIDS. Looking back over the >37 years since then stirred myriad memories. What had we learned in those 19 447 200 minutes?
Was it the critical role of community advocacy? As an immediate recognition of the severity of this syndrome, the Gay Men’s Health Crisis was founded in New York City in 1982. Was it the defining virology? One year later, Drs Luc Montagnier and Françoise Barré-Sinoussi isolated a virus they named lymphadenopathy-associated virus at the Pasteur Institute in Paris (seminal work for which they were subsequently awarded a Nobel Prize). By 1984, this virus (also known as human T-lymphotropic virus III and later known as human immunodeficiency virus 1) was recognized by Dr Robert Gallo of the US National Cancer Institute as the cause of AIDS.
Was it the 1985 approval of the first HIV antibody test? Or was it the critical acknowledgment of this epidemic with the death of film legend Rock Hudson and, in 1986, President Ronald Reagan’s first public mention of AIDS? Perhaps it concerned the pivotal role of antiretroviral therapy with the US Food and Drug Administration’s approval of AZT in 1987 or the 1988 birth of the AIDS Clinical Trials Group, which our program served as an active pediatric site. The following 525 600 minutes, which brought protests concerning AIDS drugs and the endorsement of a parallel-track policy that made new treatments available to individuals who did not qualify for clinical trials, taught the importance of accelerating access, as did the 1990 Ryan White Comprehensive AIDS Resources Emergency Act, which provided federal funds for community-based treatment.
The year 1991 brought advances in awareness with the introduction of the red ribbon and the announcement by Earvin “Magic” Johnson of his being diagnosed as HIV-positive. On the 10th anniversary of the first reports, >10 million persons who were infected with HIV were found worldwide, of whom ∼1 million were in the United States. By tennis great Arthur Ashe’s announcement in 1992, HIV/AIDS had become the leading cause of death in US men of ages 25 to 44 years.
The landmark AIDS Clinical Trials Group 076 Study, which was published in 1994 and on which we collaborated, revealed that AZT given antepartum and intrapartum to a mother and to her newborn for 6 weeks reduced the risk of maternal-infant HIV transmission by approximately two-thirds. This combined with the approval of the first protease inhibitor in 1995 and of the first nonnucleoside reverse-transcriptase inhibitor in 1996 (as well as viral load testing) created fresh optimism because antiretroviral combinations that comprised different drug classes demonstrably impacted HIV transmission, replication, and disease progression. For the first time, the number of new AIDS cases declined. As Time magazine named researcher Dr David Ho as “Man of the Year,” the journal Science proclaimed highly active antiretroviral therapy (HAART) as “Breakthrough of the Year.”
By 1997, the first incentivizing legislation for pediatric drug development was enacted; as the US Department of Health and Human Services issued its first guidelines for the use of antiretroviral therapy, AIDS-related deaths in the United States declined by >40%. Yet many critical challenges remained, including growing signs of treatment failure, adverse effects from HAART, and the challenge of supplying medications internationally. In 2000, the United States and the United Nations accelerated efforts by declaring a threat to global security, by forming a global AIDS program, and by authorizing hundreds of millions of dollars for prevention and treatment.
By the eve of Thanksgiving in 2001, collaborators and I were overjoyed to report in the New England Journal of Medicine the dramatic reduction in mortality among infants and children who were treated with HAART. Yet, despite these advances, by 2002 HIV had become the leading cause of death among individuals of ages 15 to 59 years worldwide. The Global Fund to Fight AIDS, Tuberculosis and Malaria began that year, and the (US) President’s Emergency Plan for AIDS Relief was formed in 2003. By 2006, with the passing of the first one-quarter of the century since the initial reports, the Centers for Disease Control and Prevention dealt a formidable blow to AIDS exceptionalism by revising HIV-testing guidelines to recommend screening for all persons of ages 13 to 64 years and annual screening for individuals who are at high risk.
We have come so far over these 19 447 200 minutes, yet we have so much farther to go. Thirty-seven million people, including 2 million children, are now living with HIV or AIDS worldwide; despite all efforts, including preexposure prophylaxis, ∼2 million new infections and 1 million deaths occurred in 2016, which brought the cumulative death toll to 35 million. Globally, only 53% of individuals (43% of children) who are in need of HIV therapy are receiving it.
Heartening yet humbling are the scientific and clinical advances we have experienced. Collectively, these developments have resulted in vastly improved outcomes for patients. The heartrending funerals we once attended have given way to luminous birthdays, graduations, weddings, new births, and yes, closings! Incredibly, we have come so far in rapidly racing an epidemic that was barely recognized 3 decades ago. Nevertheless, as is evident in society’s early response to HIV, inadequate understanding still contributes to stigma and precludes many people from receiving timely diagnosis and appropriate care.
Much of our success may be attributed to collaborative, multidisciplinary care with integrated HIV services provided by teams of dedicated caregivers who have developed long-standing, intimate bonds with patients and family members. The strength of these bonds, which are forged by a shared struggle against poverty, social stigmatization, substance abuse, and often concurrent illness in and death of multiple family members, have made it possible to compassionately and systematically address the needs of individuals and families who are battling HIV. I reflected on how profoundly privileged I am to work with so many exceptional people in bringing the finest fruits of science to bear on so many young lives.
Just then, I glimpsed the next e-mail from a dear, long-term patient who has been treated for HIV infection since childhood, with photos announcing the birth of her healthy infant boy—on my birthday. With 525 600 minutes, how indeed do we measure a year? Could it be as the late lyricist and playwright Jonathan Larson suggested: “In daylights, in sunsets, in midnights, in cups of coffee”? Or, alternatively, could it be in biomedical, social, and political challenges and achievements? Perhaps. However, what I will remember most is how partnerships, persistence, patience, and kindness conquer alienation, agony, anger, and fear. As the theme from Rent concludes, “Though the story never ends, let’s celebrate. Remember a year in the life of friends. Remember the love. Measure your life in love.”
Dr Cervia conceptualized and designed the article, drafted the initial manuscript, reviewed and revised the manuscript, approved the final manuscript as submitted, and agrees to be accountable for all aspects of the work.
FUNDING: No external funding.
I acknowledge the loving encouragement, guidance, and support of my wife, Denise Blumberg, MD, MPH, and the unfailing courage and dedication of my patients and colleagues.
POTENTIAL CONFLICT OF INTEREST: The author has indicated he has no potential conflicts of interest to disclose.
FINANCIAL DISCLOSURE: The author has indicated he has no financial relationships relevant to this article to disclose.