My life in books

Dr. Arthur J. Ammann’s book on the AIDS epidemic, Lethal ​Decisions: ​The ​Unnecessary ​Deaths ​of ​Women ​and ​Children ​from ​HIV/AIDS, focuses on an aspect of the victimology of AIDS that most of the other books I’ve read have paid limited attention to - the specific concerns of pediatric AIDS and the way the epidemic has affected mothers and their children.

Ammann is a pediatric immunologist, and is the first doctor who publicly identified the presence of HIV in children. His subsequent work was directed to understanding the methods of transmission between mothers and children, and advocating for appropriate care for this vulnerable population.

Ammann begins his account with the early findings of Dr. Michael Gottlieb, the physician who first reported a strange new immunological disorder appearing among young gay men. Ammann’s interest was professional. As he reports, “...I was working as a professor of pediatric immunology at Moffitt Hospital at the University of California San Francisco (UCSF) Medical Center, where I had established the first immunology laboratory devoted to the study and diagnosis of genetically acquired immunodeficiencies in both children and adults.”

In August 1981, Ammann was invited to join an ad hoc study group exploring the new disorder, and his lab was chosen as the site for immunologic tests on patients. He soon developed an immunologic profile of the adults - so far, all gay men - with the disorder, but before long, he was confronted with the existence of three children - daughters of a woman who was both a sex worker and an IV drug user - with a similar profile. Testing of the mother showed that she too had the profile characteristic of a AIDS patient. This immediately suggested to Ammann that the condition was caused by an infectious agent. Discovery of a fourth child with the same profile, who has received multiple blood transfusions, added strength to the hypothesis that the infectious agent was blood-borne.

Ammann, along with Selma Dritz, the head of the San Francisco Public Health Department, Herb Perkins of the Irwin Memorial Blood Bank and Harold Jaffee of the CDC were the first to publicise the risks of contracting AIDS from blood transfusions snd other blood products. Later, he would work closely with Elizabeth Glaser in founding the Pediatric AIDS Foundation to further research into HIV infection and treatment in children, and, in response to the need for advocacy for at-risk mothers and children in developing countries, would establish a nonprofit foundation called Global Strategies for HIV Prevention.

Ammann’s narrative of the AIDS epidemic focuses on the effects of the actions, opinions and decisions of all the various actors involved on the risks faced by women, and particularly, children. From blood banks to governments to media to pharmaceutical companies to NGOs, his focus is on the children placed at risk by delays, by denialists, by misinformation, by the valuing of profit over human lives, by failures in planning, funding and implementation of the best available treatments, particularly in developing nations.

Ammann delivers a stinging critique of the response of the American blood and blood products industry to this revelation, stating “...it became ever more obvious that the primary concern driving most people in the blood banking community was their economic preservation and liability. In contrast to the medical research community, which rushed to put all its energy into identifying the infectious agent that caused AIDS, the American Red Cross and other blood banks chose to funnel their efforts, and their vast financial resources, into convincing the public that blood transfusions were completely safe.” He is also critical of the response of the American government, charging that they, like the blood industry, sought to deceive the public about the risks of AIDS. He also discusses at length the problems in obtaining FDA approval for the use of HIV drugs on children, despite their demonstrated efficacy in controlling the disease in adults. His scorn for those who disputed and denied the scientific evidence connecting HIV infection and AIDS, and for the media that gave denialists a stage from which to spread their misinformation, is clear, as is his outrage at the deaths resulting from the availability of denialist narratives.

One issue which he returns to is the approach to AIDS prevention and treatment in developing countries. He points the finger at the attitudes of influential actors on the global scene, particularly in the wealthy, developed nations - including pharmaceutical corporations and the World Health Organisation. Despite the emergence of treatments which dramatically reduced mother-to-child transmission, “...WHO, national ministries of health, and US government-supported research grants would turn a deaf ear and continue to recommend treatment regimens that would neither control HIV progression to AIDS nor dramatically reduce perinatal HIV transmission.” Ammann writes with anger and sorrow of those who began to see the numbers of infections and deaths of children decline with the widespread use of preventative drug therapies, but allowed women and children in poorer countries to remain at risk.

“I sensed that the impact of the successful treatment of HIV by ARVs in the United States and the dramatic decline in perinatal HIV transmission was diminishing the sense of urgency over the much larger and overwhelming HIV/AIDS epidemic in low-income countries. The numbers were telling—fewer than two hundred newly infected infants in one year in the United States but more than 600,000 each year in the developing world.”

At the same time, Ammann is generous in his mentions of many of the scientists, medical researchers, activists, and sponsors and donors who made possible advances in pediatric AIDS research and treatment. He speaks with admiration of Elizabeth Glaser, one of the key co-founders if the Pediatric AIDS foundation, and details the research of many of the scientists whose work was instrumental in finding answers and new treatments, including those funded by the foundation.

Ammann’s personal involvement with some of the key organisations responsible for funding and managing AIDS research means that, unlike many of the other AIDS narratives I’ve been reading, the story here is about the people and processes involved in the scientific quest for treatments. He looks at the actions of other actors in terms of how they helped or hindered both scientific research, and the implementation of findings, and he consistently reports the costs in terms of maternal and infant infection and mortality. Amman draws attention to a number of issues related to ethics in research and treatment, from the decision of the WHO to release treatment guidelines that recommended an inferior standard of care, to the design and implementation of research studies in poorer countries that so flagrantly violated standards of ethics that they would not have been allowed to proceed in developed nations.

A large segment of the book is devoted to accounts of the work undertaken by Ammann’s Global Strategies foundation in various countries, from the Dominican Republic to the Democratic Republic of the Congo. These accounts highlight the difficulties in delivering treatment on the ground in countries plagued by poverty, violence and civil unrest.

In spite of the concentrated efforts of dedicated individuals like Dr. Ammann, the problem of pediatric AIDS remains. As he notes, “At the time of this writing in 2016, 300,000 infants still become infected each year, not because there is no treatment to prevent HIV transmission, but because of delays in protecting women from acquiring HIV infection and in implementing HAART [highly active antiretroviral therapy] for those already infected.”