Two Years of Wonder - A Memoir

Afterword By Dr. Helene Gayle

When I began my career at the CDC in 1984, few appreciated that AIDS was going to become a major public health threat. In 1981 when AIDS was first described by the Centers for Disease Control (CDC) in its Morbidity and Mortality Weekly Report (MMWR), I had just finished medical school and was just about to start my residency training in pediatrics. Two years later, in 1983, AIDS was recognized as a disease affecting children. So, although I probably treated children with HIV, I was never aware of it during my 3-year pediatric training.

For my first three years at CDC, I sat on the sidelines of the epidemic focused on other seemingly more important public health issues affecting children both domestically and globally. I watched with interest and concern as the HIV/AIDS epidemic continued to evolve. By 1987, it was clear that HIV/AIDS was deeply interwoven with issues of social justice and equity, the same issues that had led me to the field of public health in the first place. It was inescapable that HIV/AIDS was likely to be one of the defining public health issues of my lifetime. That is when I began my own journey tackling HIV/AIDS and the effort has lasted throughout the multiple decades of my career.

In the 1980s, and even through to the present day, HIV/AIDS is a disease that carries an unjust social and even moral stigma. HIV has disproportionally impacted populations that were historically marginalized in society, including gay men, IV drug users, sex workers, people of color, and poor women. Moral blame and stigma were attached to the disease to a degree not seen in most other epidemics. Even into the 1990s the unfortunate appellation "innocent victim" was applied to children born with HIV through mother-to-child transmission or hemophiliacs who were infected through blood transfusions. The clear implication being that others with HIV infection had done something to deserve it or intentionally bring it upon themselves. This moral blame not only released many parts of society from an evidence-based, public health approach to solutions, but also unduly burdened people at risk of HIV/AIDS or living with the infection with a sense of shame and denial—this often kept them from the very services that could make a crucial difference between life or death.

We have come a long way. To see the progress we have made brings me a mix of relief, accomplishment, and inspiration. We know more about the infection and how to prevent its spread and how to treat it. Effective treatment has allowed many people to live long, meaningful lives with HIV/AIDS as a chronic disease. And HIV/AIDS has advanced our understanding of the root causes or the social determinants of health—things such education, access to nutritious foods, safe neighborhoods and environments, economic stability. This understanding has led to broader solutions for decreasing health inequity. There is also less stigma attached to the diagnosis HIV/AIDS, although that still varies based on societal and cultural factors.

I give this bit of context because HIV/AIDS is an important backdrop for this story. But what Ted's work with his own story and the children's stories makes plain, is that this narrative is not just about HIV/AIDS, but about the larger story of the inequity and marginalization we see in the world and how one individual tried to come to terms with that.

The stories of Oliver, Miriam, Ivy, Harmony, Tabitha, Sofie, Nea and others, are still happening today. In some cases, HIV/AIDS is the culprit. In others it is Ebola, or it is the vulnerabilities that come from poverty, migration or dislocation due to climate change, war, or ethnic-based conflicts. Common to all of these is the contributing factor of the vast inequalities of wealth that currently characterize our globe. Inequality manifests as unequal freedom to resources, information, education, expression, and safety. It appears as unequal freedom from discrimination and oppression. We, as a global community, have made great progress in the fight against HIV/AIDS, but the challenges posed by an increasingly unequal and inequitable society remain. As long as they do, people, children, families will still be vulnerable.