On Call: A Doctor's Journey in Public Service

Fauci recounts the harrowing early days of treating AIDS patients in 1982. His NIH team, which included Dr. Clifford Lane and Dr. Henry Masur, quickly began receiving patients despite their limited knowledge of the disease at that time. One of their first patients, Ronald Rinaldi, had a healthy twin brother, which offered hope for a potential bone marrow transplant. However, the intervention to save him failed, as did subsequent treatments. Ron’s condition worsened and, during one visit, Fauci discovered that Ron had suddenly lost his vision due to a cytomegalovirus infection. The moment devastated Fauci, leading him to break down in tears privately, overwhelmed by the inability to save his patient. This experience was new to him, as he had been previously mostly successful in treating his patients.

The demands of this work strained Fauci’s personal life. He recounts his divorce from his wife of only one year due to the long working hours and the stress the experience of treating AIDS patients put on him. Despite the emotional toll, he and his team provided the best care possible, focusing on compassion and clinical skill even though a cure was out of reach. Fauci recounts how the experience deeply affected him, leaving a lasting sense of trauma.

Fauci describes his shift to studying AIDS at the NIH during the early 1980s, deciding to focus on immune dysfunction in patients when the cause of the disease was still unknown. As an immunologist, Fauci examined abnormalities in B cell function (B cells are white cells that begin in the bone marrow and protect the body from infections through the production of antibodies). Fauci noted that, despite severe immune deficiencies, B cells in AIDS patients were hyperactivated. His team published these findings in 1983, revealing a key part of the disease’s progression. This immune hyperactivation would later be understood as a response to the human immunodeficiency virus (HIV), a virus not yet identified at that time.

Global research efforts were underway, led by virologists like Robert Gallo and French scientists Luc Montagnier and Françoise Barré-Sinoussi. In 1983, Montagnier’s team discovered HIV at the Institut Pasteur, and Gallo confirmed it as the cause of AIDS in 1984. This discovery allowed for the development of a blood test in 1985, crucial for screening blood supplies and identifying at-risk populations. Studies soon revealed that HIV infections were far more widespread than initially believed.

This new understanding transformed Fauci’s research focus and marked a turning point in the global fight against AIDS. Amid these developments, Fauci faced a major career decision when Dr. Richard Krause, director of the National Institute of Allergy and Infectious Diseases (NIAID), stepped down from his position. Fauci was encouraged to apply for the role by friends and colleagues. Although initially hesitant due to his dedication to patient care, he agreed, although he asked to be allowed to continue his research and patient interactions. In 1984, Fauci was appointed director of NIAID, a role that allowed him to advocate for increased resources for AIDS research, while maintaining his hands-on work with patients.

Fauci discusses his approach as the new director of NIAID, emphasizing the importance of understanding the organization thoroughly before implementing changes. With experience as a scientist and clinician, but limited administrative skills, Fauci spent six months learning the institute’s operations and building relationships with its staff before making any crucial decisions.

Fauci encountered a lack of urgency among senior staff at the NIAID toward emerging research fields like immunology and AIDS. He speculates that the reason for this reticence was internalized anti-gay bias, as HIV was associated with homosexual communities. Thus, he realized the need for increased resources for HIV research and successfully lobbied for a significant budget increase.

Despite pushback, he established the Division of AIDS within NIAID, realizing that effective leadership requires tough decisions and perseverance, even when faced with resistance from colleagues. Through these efforts, Fauci tried to address the growing HIV crisis and reshape NIAID’s priorities, while continuously learning about advocacy, leadership, and strategic resource allocation.

Fauci details his evolving friendship with Dr. C. Everett Koop, a renowned surgeon and, subsequently, US Surgeon General. Fauci had first encountered Koop during his medical training at Cornell. He describes Dr. Koop with admiration for his pioneering work in pediatric surgery and his life-saving stance. Fauci also notes that Koop expressed a pro-life (anti-abortion) stance for which he was widely criticized. After Koop’s controversial nomination as 13th Surgeon General of the US, Fauci became his physician. Koop complained of a wide range of symptoms and Fauci ended up diagnosing his stress as stemming from the intense media scrutiny he faced—specifically directed at his pro-life ideology.

Fauci and Koop thus formed a bond, and as the AIDS crisis intensified in the mid-1980s, Koop began to seek Fauci’s insights to understand the epidemic better. Their evening discussions in Fauci’s office, which Koop called “nighttime tutorials,” prepared Koop to take a public stance on AIDS (75). Koop’s landmark 1986 report, informed by Fauci’s research, candidly addressed the disease’s transmission and prevention, breaking social taboos. Despite criticism, Koop pushed to distribute an educational pamphlet on AIDS to every US household through the mail. With Fauci’s support, NIAID helped finance the initiative. Fauci notes that the pamphlet had a significant impact on public awareness, though it also sparked controversy. Fauci describes his friendship with Koop as a candid and long-lasting bond. Years later, the two men celebrate their connection by revisiting their shared Brooklyn roots.

Fauci highlights the pivotal moment when the role of the human immunodeficiency virus (HIV) in the AIDS epidemic was discovered and emphasizes that understanding the virus’s impact on the immune system was a slow, global effort. Although researchers had more knowledge about the disease, there was still no effective treatment, and desperate patients kept seeking unproven therapies. Recognizing the need for focused drug development, Fauci established the National Cooperative Drug Discovery Groups (NCDDGs) and the AIDS Treatment Evaluation Units (ATEUs) to accelerate research and clinical trials. The ATEUs, which later expanded into the AIDS Clinical Trials Group (ACTG), become central to testing new drugs like azidothymidine (AZT), which showed promise in suppressing HIV.

However, the optimism surrounding AZT diminished as HIV’s rapid mutation led to drug resistance. This realization shifted research toward using drug combinations to control the virus effectively. While progress continued with drugs like didanosine, advances were slow, and the epidemic worsened, with over 513,000 AIDS cases reported in the US by 1995. Meanwhile, medical strategies evolved to prevent infections in patients with weakened immune systems, improving survival before the arrival of more effective therapies.

In 1974, Anthony Fauci met Dr. James Carroll Hill at NIAID, forming a close professional and personal bond over the years. Hill was a former Navy officer and microbiologist. He joined NIAID as a program officer before becoming Fauci’s special assistant when Fauci became director. Open about being gay despite societal bias, Hill helped Fauci engage with the AIDS community, often hosting gatherings for activists. Known for his humor and warmth, Hill had a great positive impact on Fauci’s work.

Over time, Hill became Fauci’s close friend and deputy, managed planning during their international trips, and ensured they arrived well in advance at the airport—an aspect that Fauci remembers with humor. In 1985, Hill, who had contracted hepatitis B, tested positive for HIV—a devastating revelation given the stigma surrounding AIDS. Despite Hill’s fear of damaging Fauci’s and the lab’s reputation, Fauci assured him of his unwavering support. For the rest of Hill’s career at the NIAID, Fauci monitored Hill’s health, hoping for new discoveries in the field.

Hill also became an integral part of Fauci’s life and family when he served as godfather to Fauci’s children—an important role in Italian- (and Irish American on the side of Fauci’s wife) heritage. Despite struggling with worsening HIV and hepatitis, Hill remained dedicated to his work. In 1997, a surgical complication led to his untimely death, leaving Fauci with profound grief yet lasting memories of Hill’s humor, resilience, and unwavering friendship.

Chapter 8 discusses the global spread of AIDS beyond the gay community in the US. By the early 1980s, the disease was found to have infected heterosexual individuals in Europe and Africa, particularly in Zaire (now the Democratic Republic of the Congo) and Haiti, challenging the researchers’ assumptions about transmission methods. With the support of NIAID, Dr. Peter Piot, a Belgian doctor who had studied medicine at the University of Washington in Seattle, and other medics specialized in infectious diseases, launched Project SIDA (the acronym for AIDS in French) in Zaire, uncovering widespread heterosexual transmission. The project exposed a staggering infection rate, particularly among pregnant women and sex workers, revealing the immense, unaddressed burden in developing nations, especially sub-Saharan Africa.

Chapter 9 describes Dr. Fauci’s relationship with AIDS activists as the AIDS crisis developed and the need for political involvement grew. As the US government’s slow response frustrated the gay community, Larry Kramer, a playwright, producer, and public gay rights and health advocate, became a leading critic and formed ACT UP, a grassroots activist organization working to push for urgent political action and raise awareness about the AIDS crisis. Kramer often harshly criticized the government and Fauci, whom he saw as a representative of the government’s inefficient policies to end the AIDS pandemic and care for AIDS patients. Instead of seeing Kramer as an adversary, Fauci understood his anger and valued his input. As a result, Fauci focused on expanding AIDS research, recognizing the activists’ pressure as essential for change.

Dr. Fauci’s alliance with AIDS activists developed, particularly around the issue of access to experimental drugs. Many activists were frustrated with slow clinical trial processes and argued for faster availability of unapproved treatments. Inspired by Marty Delaney, founder of Project Inform, an advocacy group, Fauci supported the idea of allowing patients to access drugs that were still undergoing trials. Despite the resistance of the US Food and Drug Administration (FDA), Fauci publicly endorsed this approach during a speech in San Francisco, which subsequently drew praise from activists and established a new precedent in drug policy. Though his stance was criticized by regulatory officials, it earned him the trust of activists, including Delaney and Kramer, who started to see Fauci as an ally in their fight for improved AIDS care.

Fauci’s engagement with these advocates led to ongoing discussions and policy shifts. Fauci appointed Marty Delaney to NIAID committees, as he appreciated his insights into AIDS treatment gaps between different communities. Their collaboration highlighted the critical role of activist input in health policy, a sentiment Fauci also experienced through encounters with other influential activists, such as Peter Staley and Bob Rafsky, both part of the ACT UP organization. Through open dialogue, Fauci and the activists worked toward more compassionate and responsive AIDS policies, which shaped the government’s approach to the crisis.

Fauci narrates how, in late 1989, he engaged activists in closed meetings at NIAID, against his staff’s objections, allowing ACT UP members to witness firsthand the development of AIDS trial protocols. This decision proved invaluable, as activists offered crucial insights to improve medicine trial designs. In 1990, Peter Staley and others planned a visible protest at NIH, which Fauci witnessed with some concern. This protest emphasized the ongoing need to push for federal actions in the context of the AIDS pandemic. Later, activists from ACT UP formed a focused group working closely with government bodies to accelerate AIDS research. Despite progress, Kramer continued publicly critiquing Fauci, who continued to rise to the challenge. Over the years, their initially adversarial relationship evolved into one of mutual respect.

Fauci describes a pivotal moment in his career when Vice President George H.W. Bush visited the NIH in April 1987. The visit was a high-profile event, as Bush was to run for the presidency the following year. Fauci briefed the vice president on his work at the NIH, including ongoing HIV/AIDS research. Bush, seen as more proactive than President Reagan regarding the AIDS crisis, impressed Fauci with thoughtful questions about the scientific and personal aspects of the epidemic, showing great empathy for severely ill patients.

Over the following months, Bush invited Fauci to multiple events and often consulted him on health-related issues, which indicated that Fauci’s expertise was more and more needed in the government. During one occasion, Fauci’s colleague and friend, Dr. James Dickson III, a thoracic surgeon and combat medic who served as advisor for Fauci, advised him to remain truthful in his guidance to political leaders, even when uncomfortable. This advice proved critical as Fauci navigated the demands of advising influential government figures.

Fauci’s relationship with Bush sometimes led to public misunderstandings. For example, during a Senate hearing, Senator Edward Kennedy implied Fauci’s closeness to Bush could signify alignment with the administration’s positions. Despite these pressures, Fauci maintained a neutral, evidence-based approach in his advisement.

At a later time, Bush publicly praised Fauci during a presidential debate, marking Fauci’s emergence as a respected scientific figure nationally. This newfound role granted Fauci unprecedented access to policymakers, allowing him to advocate more effectively for HIV/AIDS research and treatment. This commitment solidified Fauci’s reputation across party lines, demonstrating the significant impact a steadfast commitment to truth and science could have in a politically charged environment.

In 1989, NIH director James Wyngaarden resigned, and Fauci was a top candidate for the role. Reluctant to leave his hands-on work, Fauci declined President George H.W. Bush’s offer due to his commitment to AIDS research. This decision enhanced Bush’s respect for Fauci, who notes Bush’s empathy and proactive support for HIV/AIDS funding, increasing NIH’s AIDS budget from $500 million to over $1 billion.

Fauci shares how becoming a father of three daughters transformed his life. He describes the personalities of his three daughters. Jennifer, his eldest daughter, is outspoken and often challenges him, Megan, the middle daughter, is sensitive and works as an elementary school teacher, while Alison, the youngest daughter, excels academically and athletically.

Fauci describes the challenge of balancing family with his intense career, especially during the HIV/AIDS crisis. His wife, Christine, also balanced a demanding career as a nurse and later pursued a PhD in bioethics, subsequently becoming a leader in her field. Despite the pressures of work, the Fauci family has maintained a strong bond through the years.

Fauci describes the heightened political and scientific focus on HIV/AIDS in the early 1990s. During Bill Clinton’s presidency, HIV/AIDS activists gained greater access to the White House. Donna Shalala, the new Secretary of Health and Human Services, appointed Fauci as her key advisor on the AIDS pandemic.

Scientific advances during this period included new drug combinations to slow HIV progression, though no treatment could fully suppress the virus. Fauci’s research with colleagues like Giuseppe Pantaleo and Ashley Haase revealed HIV’s persistent replication in lymphoid tissues, which showed that the virus erodes the immune system even when patients appear symptom-free. These findings emphasized the importance of early treatment and the development of a potential vaccine.

Fauci explains the scientific challenges in developing an HIV vaccine, given that, unlike other diseases, HIV eludes a natural immune response. Early vaccine trials showed safety but failed to produce effective, neutralizing antibodies. Fauci’s lab and other research teams worldwide found that HIV developed in a particular way, defying traditional vaccine strategies.

Fauci recalls Albert Sabin’s pessimism about an HIV vaccine, which has proven accurate so far. Despite setbacks, a partially effective trial in Thailand in the 2000s offered hope, though subsequent trials failed. During a 1996 meeting, President Clinton endorsed Fauci’s suggestion to build a centralized Vaccine Research Center (VRC) at NIH. Although an HIV vaccine remains elusive, the VRC made groundbreaking strides in other areas, including Ebola, SARS, Zika, and COVID-19 vaccines.

Fauci recounts the transformative impact of combination antiretroviral therapy (ART) on HIV treatment. Initially, single-drug therapies like AZT had only limited effects. However, by 1996, protease inhibitors such as saquinavir, ritonavir, and indinavir, which prevent a virus from replicating when combined with existing drugs, effectively suppressed HIV to undetectable levels. This breakthrough, presented at the 1996 International AIDS Society meeting, marked a “Lazarus effect,” as patients in critical condition started recovering rapidly and resuming normal lives (151).

Globally, the use of combination ART expanded. Over time, dosing improved from complex regimens to single daily pills. These treatments succeeded in extending life expectancy for people with HIV, allowing most HIV infected people to live well into old age. Fauci highlights the NIH and pharmaceutical collaboration that led to this progress, underscoring it as one of modern medicine’s greatest achievements.

In Chapter 15, Fauci addresses the damaging rise of HIV denialism, beginning in 1987 when German scientist Dr. Peter Duesberg started questioning HIV’s role in causing AIDS. Despite overwhelming evidence, denialism gained visibility, with Nobel laureate Kary Mullis and others lending support, complicating public understanding. Fauci initially ignored the claims, but their persistence led him to publish a formal refutation in 1995.

The denialist movement then spread to South Africa, where President Thabo Mbeki and Health Minister Dr. Manto Tshabalala-Msimang rejected antiretroviral drugs, promoting natural remedies such as honey and garlic instead. Their stance blocked AIDS treatment access, leading to an estimated 330,000 deaths. Eventually, activist Zackie Achmat’s efforts and a global response forced policy change and allowed wide access to antiretroviral drugs.

Fauci discusses how, by 2000, while antiretroviral drugs were saving lives in wealthier countries, millions in the developing world, especially sub-Saharan Africa, continued to die without access. Efforts to lower drug prices faced resistance from pharmaceutical companies, as they were concerned that reduced prices abroad could drive down prices globally. Nevertheless, President Clinton’s 2000 executive order allowed developing countries to import generics. Internationally, the HIV/AIDS crisis was recognized as a global security threat, as infection rates weakened militaries and economies, particularly in Africa.