Last week, after a screening of David France’s “How to Survive a Plague” for 200 Harvard College students followed by a panel of AIDS activists — I found myself among the angriest I’ve been since starting my doctorate. I was angry that in this session for “Case Studies in Global Health: Biosocial Perspectives,” a course that I am part of the teaching team for — alongside Drs. Arthur Kleinman, Paul Farmer, Anne Becker, and Salmaan Keshavjee — we missed an opportunity to paint a full picture of the biological and social complexities of the HIV/AIDS epidemic for a generation of students who never knew a world without HIV.
I was angry that the film’s 1980s/90s narrative — about the passionate struggles and triumphs of HIV/AIDS activist groups like ACT UP and TAG, started by panelist Gregg Bordowitz — stopped short of acknowledging that 35 million people today are still infected and could eventually die of a preventable disease. I was angry that students didn’t ask about the disparities that exist with HIV/AIDS, like how the disease was infecting and affecting different parts of the population based on race, ethnicity, geographic location, and sexual practices; and why global health professionals like myself weren’t deconstructing the terms we use (like “disparities”) to reach a wider audience. And most of all, I was angry that no one else — students, faculty, or panelists alike — seemed to be as angry as me.
Didn’t anyone else feel impassioned that almost 40 years after its emergence, HIV/AIDS continues to spread — and kill — based on uneven distributions of power, privilege, and discrimination?
My anger toward our society’s response to HIV/AIDS today is rooted in several facts:
It is a fact that the human immunodeficiency virus (HIV), which can eventually become the acquired immune deficiency syndrome (AIDS), reduces the concentration of immunity-boosting white blood cells eventually making it impossible to fight off certain illnesses. To those of us steeped in “data” and “numbers,” it’s no surprise HIV/AIDS is the fifth-leading cause of disability adjusted life years (DALYs), or simply put, a leading cause of early death and reduced quality of life (1). Talk to anyone infected with the disease, like the dozens of HIV-positive women I worked with as Monitoring and Evaluation Coordinator for mothers2mothes in Malawi, and they will share that being infected has completely changed the way they live their lives.
It is a fact that HIV/AIDS affects sub-populations, or groups of people, differently. More than 70% of the 35 million infected, and an almost equal proportion of the 1.6 million annual deaths, occur on the sub-Saharan African continent (2). Over 75% of HIV-positive children are currently not getting antiretroviral treatment (3). It is not often acknowledged that the 2.1 million new infections last year alone are, in part, the result of an increasing rate of HIV infection combined with poor access to treatment in countries outside the African continent, such as Indonesia and Russia (3). And all too easily we forget about HIV, and its intersection with other illnesses like TB, among vulnerable populations such as those incarcerated (3). These disparities don’t exist because people who belong to these groups are so different, in their immune system’s response or otherwise, from others in the world; instead they hint at a bigger systemic problem.
It is a fact that the U.S. should be included in any comprehensive approach to “global health,” and that it is a critical example of the complexities of the HIV/AIDS epidemic. Just over one million people are infected, and infections are more than 60% lower than at the introduction of the epidemic in the 1980s (4).
What this story would exclude, however, is that the rate of HIV/AIDS in some U.S. cities is actually higher than other parts of the world; Washington, D.C. has a higher rate than Ghana, Rwanda, and 26 other African countries (5)
More than 50,000 people in the U.S. are still infected each year. Similar to global disparities, men who have sex with men (MSM) and injecting drug users are among the most vulnerable groups; their rate of infection has increased since 2008 (6). Moreover, blacks, who make up only 13% of the U.S. population, account for 50% of annual AIDS infections (7); one in 32 black women will become infected in the U.S. while the risk for black men is one in 16 (6). And, perhaps what frightens me most is that no one is talking about who AIDS still kills in this country — it is among the top 5 causes of death for black women aged 25 to 44. In other words, for Americans like me (8).
I would paint yet another incomplete picture if I didn’t acknowledge that progress has been made. HIV/AIDS is no longer called “slim” for the untreatable wasting it used to cause; being infected no longer has to be a death sentence. Billions of dollars for HIV treatment have been mobilized by U.S. leadership through the President’s Emergency Plan for AIDS Relief since its introduction in 2003. Mother-to-child transmission is slowly being eliminated worldwide, including on the African continent (9).
And although we recognize these gains, 27 years after the first World AIDS Day, the atmosphere feels somber. I don’t hear mainstream public health conversations that acknowledge that more than 60% of those in need still can’t access medication, or that 20% of those infected don’t know they are HIV-positive, often for reasons beyond individual control (10). I don’t feel the excitement that activists like Paul Farmer and Gregg Bordowitz had in the early 90s, the energy that propelled me into AIDS activism as a student nearly 12 years ago. I don’t hear people use uncomfortable words like “power” and “privilege” and “discrimination” to explain that the problem is not the absence of money but instead the lack of prioritization from people in positions of power to implement culturally-appropriate prevention, treatment, care, and systems-building efforts. I mostly hear silence.
On this World AIDS Day 2014, we cannot forget that the HIV/AIDS epidemic is still that — an epidemic.
Today, I encourage you to join me and be angry. We collectively as activists, researchers, students, educators, or just as citizens of a globalized world need to remember that sense of urgency, to remind ourselves that power and privilege can be used for good and that we — both the activists of the previous generations and emerging leaders from current generations– have an obligation to take our anger, and passion, and continue to fight for change.
Yvette is an independent consultant and doctoral student in Global Health and Population at the Harvard T. H. Chan School of Public Health. She is also a Global Health Corps alumnus.
References
1. Institute for Health Metrics and Evaluation. Global Burden of Disease: Generating Evidence, Guiding Policy. Seattle, Washington : IHME, 2013.
2. UNAIDS. 2013 Global Report. Geneva, Switzerland : UNAIDS, 2014.
3. — . Gap Report. Geneva, Switzerland : UNAIDS, 2014.
4. Centers for Disease Control and Prevention. Today’s HIV/AIDS Epidemic. Atlanta, Georgia : Centers for Disease Control and Prevention, 2014.
5. Donnely, John and Schatz, Julian . Groups Fighting HIV in D.C. Find Lessons in Africa. PBS News Hour. June 12, 2012.
6. Centers for Disease Control and Prevention. HIV Surveillance Report, 2011. Atlanta, Georgia : Centers for Disease Control and Prevention, 2013. p. Vol. 23. .
7. NAACP. HIV/AIDS. Baltimore, Maryland : NAACP, 2014.
8. Centers for Disease Control and Prevention. Leading Causes of Death by Age Group, Black Females-United States 2010. Atlanta, Georgia : Centers for Disease Control and Prevention, 2010.
9. World Health Organization. First PROMISE study results confirm WHO recommendations to treat pregnant women and reduce mother-to-child-transmission of HIV. Geneva, Switzerland : WHO, 2014. HIV/AIDS.
10. UNAIDS. Treatment 2015. Geneva, Switzerland : UNAIDS, 2012.