Activism, Epidemiology and Population Health, Media, Pop Culture

The Impact and Importance of AIDS Activism

A few weeks ago I was lucky enough to interview David France, a journalist and filmmaker who most recently wrote and directed the movie How to Survive a Plague, which has been nominated for Best Documentary at this year’s Academy Awards. The film details the work of the AIDS Coalition to Unleash Power (ACT UP), an activist organization that started in NYC’s Greenwich Village in 1987 in response to the rapidly growing and lethal AIDS epidemic among the gay population. Through political action like protests, public funeral ceremonies, and storming the buildings of the National Institutes of Health, ACT UP initiated ‘treatment activism,’ accelerating the development and distribution of AIDS treatment drugs and changing the pharmaceutical industry’s closed door research and development process to one that incorporated the insight and research of activists themselves. I wanted to learn more about what compelled him to create a film focused on this specific strain of activism, and how he saw the work of ACT UP being relevant to movements today.

My favorite of his responses was when I asked him if there were things that he wished had made it into the film but had to be cut because of the evolving narrative, and what those omissions were. I thought his answer was particularly moving:

“You know what? What broke my heart was leaving out people. People that did amazing things. Even in this very small line of inquiry that I brought to it, which is treatment activism. Other people were working on housing and prevention and pediatric issues, IV drug use issues. Even in just treatment activism I left out a huge number of players, many of whom died, whose lives in the last years were dedicated to this altruistic struggle to change the world of science and medicine. And they ultimately succeeded.”

The full transcript of the interview was published this morning over at The 2×2 Project, so head on over to read everything he had to say. Also check out Mr. France’s website, which has the archives of his incredible journalistic career, which he spent covering HIV and AIDS for years. And of course, I encourage everyone to see the film to witness just how far these grassroots activists got in advocating for and ensuring access to life-saving treatments and the disbursement of research that literally helped save millions of lives.

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Epidemiology and Population Health, Feminism, Health Behavior, Mental Health, Public Health, Rape and Sexual Assault, Reproductive and Sexual Health, Violence Against Women, Women's Health

Retraumatization: The Increased Risk of HIV Transmission among Abuse and Assault Victims

While the transmission of HIV and the causes of HIV-related death are actually more complicated—and even more nuanced—than public discussion would let on, a few presumptions about it remain fairly accurate.

For women who are marginalized in their communities, who are victims of abuse or assault, and who are economically or socially dependent on a spouse, the risk of them contracting HIV or dying from multiple complications from AIDS is simply greater than that of women fortunate enough to not be subjected to these circumstances. Take these scenarios:

  • The power dynamic in an abusive relationship may prohibit women from being able to protect herself from a partner who refuses to wear a condom
  • Women in poverty and those who need to rely on a partner for financial support may have greater risk of comorbid infections than women of economic independence. They are less likely to have the health insurance and relationship with a healthcare provider that would support HIV testing and provide the essential—and expensive—HIV medications to ensure a healthy life and lower the risk of co-morbid infections
  • People without social support, living in fear of what an HIV-positive diagnosis means, or those who have reason to fear stigma around personal behavior when seeking treatment are less likely to know where to access treatment or seek it out because of that fear, stigma and lack of support

Common sense would seem to support these statements. But until recently, the pathways of infection were not always clear, and while the conclusions above seemed certainly reasonable, specific data to support them had been difficult to collect. Two recent studies led by a UCSF-researcher have changed that. One synthesized what is known about PTSD and exposure to trauma among HIV-positive women, and the other explored the root of this relationship.

The results were remarkable. HIV-positive women had between two and six times the rates of childhood and adult physical and sexual abuse, and PTSD. The snapshot of risk behaviors among HIV-positive women was sobering:

  Sample size Number (%) of participants with each characteristic
Sexual activity
Any sexual activity in the past 6 months 113 61 (54.0%)
 With a main partnerMedian number of main partners (if any) 61 43 (70.5%)1 (range 1–2)
 With casual partnersMedian number of casual partners (if any)a 61 23 (37.7%)1 (range 1–25)
Sex with any HIV negative or unknown serostatus partners (if sexually active) in the last 6 months 61 51 (83.6%)
 Disclosure of HIV status less than all of the time with these partners 51 29 (56.9%)
 Using condoms less than all of the time with these partners 51 31 (60.8%)
 Detectable viral load 51 30 (58.8%)
 Disclosure of HIV status less than all of the time, and using condoms less than all of the time, and a detectable viral load 51 16 (31.4%)
Substance use (any, recent)
Cigarettes 110 71 (64.5%)
Alcohol 111 50 (45.0%)
Marijuana 111 39 (35.1%)
Crack/cocaine, heroin, and/or methamphetamines 111 45 (40.5%)
IDUb 112 11 (9.8%)
 IDU who share needles 11 5 (45.5%)
 IDU who have a detectable viral load 11 6 (54.5%)

aOne participant had a very high number of sexual partners (N = 250) and was excluded from the analysis; b IDU injection drug use; ©2012 Machtinger, et al. (retrieved December 16, 2012.)

There were striking findings in terms of both HIV treatment failure and the impact of the above risk behavior in these women, bringing us the first real data hoping to explain this relationship. Those who suffered from recent trauma had more than four times the odds of anti-retroviral (ART) failure while on treatment than HIV-positive non-victims—and this was seemingly not due to self-reported poor adherence to the medication. One potential explanation offered by the study authors is that abuse and trauma interfere with an individual’s ability to stay on a consistent medication schedule, which is essential for control of the virus. Other studies have confirmed that abuse manifest as control, in which a male partner prevents his HIV-positive female partner from accessing services at a clinic out of fear that the stigma of HIV would be attached to him.

HIV-positive victims of recent trauma also all reported experiencing what the study calls “coerced sex,” and have over three times the odds of un-traumatized women of having sex with HIV-negative or status-unknown individuals. They had greater than four times the odds of inconsistent condom use, potentially exposing those casual partners to the virus. While high-risk sex behavior is always a factor in HIV-transmission, HIV-positive individuals who adhere consistently to HIV treatments are significantly less likely to infect HIV-negative partners during sex. So the lack of treatment adherence among traumatized HIV-positive women combined with the risky sex behavior is a great concern.

Interestingly, these figures were only significant among women who experienced recent trauma, indicating that the ongoing—not merely one occurrence—circumstances of abuse are the key to the relationship between HIV-infection and HIV-related illness and death. This can actually be seen as a snapshot of hope—if we are able to offer abuse, assault, and PTSD victims the appropriate support to heal from the experiences, we may be able to weaken the HIV/trauma relationship.

These studies draw a clear line between victims of assault and trauma and both the spread of HIV within their communities and the increased risk of HIV-related illness and death. But interestingly, the risk goes much deeper than these socioeconomic circumstances. The conversation around HIV transmission is generally split into one of two categories: social and behavioral—risky activity, injection drug use, the prejudicial judgment of sex workers; and medical and clinical—how the virus infiltrates the immune system, takes over cells, and how it is and isn’t suppressed with antiretroviral medications. What isn’t usually discussed is the possible combination of these two categories and how together they create a perfect storm for potential infection.

Recent studies have shown that those individuals suffering from PTSD had significantly higher rates of cytomegalovirus (CMV) in their body. A virus that is found in between 50%-80% of adults in the United States, CMV remains largely undetected—latent, suppressed, unproblematic—in healthy individuals. It’s also seen as a marker of immune health and function, and of the body’s ability to control potential infections. Given that 30% of American women with HIV/AIDS have PTSD (five times the national average), the potential relationship between their HIV-status and even further compromised immune function could lead to a myriad of comorbid infections and premature death. Other research has also shown that additional biological mechanisms may prevent ART-treatment from being as effective as possible, including high cortisol (stress hormone) levels. Not only do these victims have to fight against abuse and assault, they have been left without the essential social support to decrease risky behaviors that may expose others to the virus, and their own bodies are in revolt.

Collecting this kind of information is difficult. It requires consistent and positive communication between women and providers, unobstructed access to medical care and uninterrupted ART treatment, and of course, in this example, most importantly—removal from an abusive environment.

The combination of immunosuppression due to PTSD, the detectable rates of HIV in traumatized women whose viral loads are not suppressed by consistent anti-retroviral treatments, and the concurrent risk behaviors of abused HIV-positive women, all contribute to higher rates of HIV-infection in communities, as well as the potential for co-morbid infections and HIV-related death. Until these women are able to find the essential social and community support, free from abuse and trauma, and until their access to care and preventative measures are fully realized, the relationship between trauma and HIV will only deepen.

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Child Development and Child Health, Health Education, International, Public Health

Child Mortality – What Are the True Biggest Causes?

A great image from Population Services International‘s most recent issue of their magazine, Impact, from the cover article written by Desmond Chavasse, Ph.D, Vice President, Malaria Control & Child Survival, PSI, about causes of child mortality globally.

Causes of Child Mortality – Image courtesy of Population Services International

One of the purposes of the image, of course, is to show the stark contrast between directed funding for treatment and eradication of certain diseases and the number of children afflicted with these illnesses. How does this impact our understanding of global health and of the marketing around certain hot topic health issues and ways in which donors feel as though they are contributing to a decline in preventable deaths?

When I worked in development for HIV/AIDS organizations, it was fascinating to speak with donors about their reasons for giving and their understanding of the prevalence and incidence (and the general audience grasp of the word incidence, which is the measure of risk of contracting a certain illness or disease within a specified time frame) of HIV. Contrast this with the understanding of malaria, TB, diarrhea, deaths due to childbirth complications (for the mother and the infant), and the gap between perception and reality was startling. In no way do I want to deny the importance of consistent development support for all diseases on a global scale, but I do think there is something lacking in terms of the education around these issues for donors and even some advocates.

Solutions? Come chat with me on Twitter.

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