1980s Redux? The Troubling Criminalization of HIV

Nick Rhoades, an HIV-positive Iowa man, did exactly what anyone who was privy to a quality sex education program was told to do—he used a condom to protect himself and his partner during a sexual encounter. However, because Rhoades did not disclose his status to this partner, under his state’s law he was arrested, tried, branded a felon, and sentenced to 25 years in prison. He was also required to register as a sex offender, which will follow him for the rest of his life.

One crucial piece of information was buried throughout the process: Rhoades’ partner did not contract HIV through their protected, consensual encounter.

The United States has more criminal laws regarding exposure and transmission of HIV than any other country in the world. Over 125 cases were filed between 2008-2011 alone. By the year 2000, two-thirds of states had HIV-specific laws or had added provisions about HIV to existing laws.

As convictions under these laws mount, health professionals are raising concerns that they could have the perverse effect of setting back efforts to prevent HIV in a way that is reminiscent of the early 1980s.

HIV criminalization laws date back to 1990, when federal legislation aimed to fight the spread of HIV, such as the Ryan White Care Act, required states to punish those who infect others as a requirement for benefitting from government funds.

The laws differ greatly from state to state, so much so that someone committing the same act in two different states could face a felony charge in one, and no repercussions in the other.

For example, in California, to be charged with a felony, a person must know his or her HIV status but not disclosed it and expose someone to the virus via unprotected sex, with the specific intent of infecting the other person. (That last part is tricky, since California also explicitly states that knowing one’s status does not in itself mean one is intending to infect another.) [Note: since this article’s original publication, California lawmakers have voted to reduce the penalty for knowingly potentially exposing someone to HIV from a felony to a misdemeanor.]

The law in Michigan is much harsher. There, failing to disclose HIV-status before having sex with a partner is a felony, regardless of whether or not a condom is used or exposure to the virus or transmission occurs.

Like Michigan, many states’ laws “don’t always account for consent, and very few talk about condom use,” says Professor Leslie Wolf of Georgia State University, who has done extensive research on various HIV laws and policy.

On appeal, Nick Rhoades was given a suspended sentence after serving a year in prison. His sex offender status remains, despite the absence of intent to transmit the virus, as Rhoades’ new representation, Lambda Legal, said was evident by his use of protection.

At least 25 percent of prosecutions in the U.S. even target behavior that has been proven not to lead to the transmission of the virus, actions like spitting and biting, according to the education and advocacy site AIDSMeds, now part of POZ.

For instance, Michigan pursued criminal charges, including terrorism charges, against an HIV-positive man who bit a neighbor during a fight. The state drew on precedent from an earlier Michigan lawsuit that deems HIV-infected blood a harmful biological substance.

The Centers for Disease Control and Prevention specifically notes that HIV cannot be transmitted via saliva, and in regards to biting, specifies, “each of the very small number of cases has included severe trauma with extensive tissue damage and the presence of blood.”

In 2009, a District Court judge in Maine extended the sentence of a woman who was arrested for faking immigration documents simply because she was HIV-positive and pregnant. The judge personally decided to double the federally recommended jail time for her offense because it would keep her in prison until she gave birth—despite before her arrest having arranged healthcare to ensure she would not transmit the virus to her baby.

“On a larger level, HIV criminalization reinforces this idea that someone who is HIV-positive, they’re dirty, they’re bad…all these stereotypes get reinforced,” said Dr. Marguerita Lightfoot, professor of medicine at the University of California, San Francisco and Director of the University’s Center for AIDS Prevention Studies, who has worked extensively on HIV-prevention programs, and directly with a diverse range of people infected with or affected by HIV.

Criminalization also revitalizes not just fear and discrimination, but misinformation, contributing to the thinking that HIV remains a death sentence.

Today, HIV is still a serious diagnosis, but antiretroviral drugs have added decades to the lives of HIV-positive individuals, turning it into a manageable, chronic disease.

Penalizing actions like biting and spitting is reminiscent of the 1980s, when little was known about HIV, and epidemiologic studies recommended no sexual contact at all with an infected individual.

What’s more, HIV is more difficult to contract than is often realized. Epidemiological and biological research has illuminated the disparate difficulty in transmitting HIV, which is highly dependent on the specific behavior and the viral load of the individuals.

For example, if one is on the receiving end of unprotected anal sex from an HIV-positive individual, the risk is significantly higher than if one is an HIV-negative male having unprotected sex with an HIV-positive female. Risk varies if other sexually transmitted infections are present, if the HIV-positive individual was recently infected, if the male partner is circumcised, and a multitude of other factors. These factors are not incorporated into the laws.

As Professor Wolf puts it, the laws “don’t reflect [what we know]. If we’re going to keep them, they have to keep up with what is true.”

The laws also undermine prevention education that emphasizes safe sex by criminalizing individuals after they’ve employed the exact strategies that educators and researchers recommend to prevent HIV transmission, according to Dr. Lightfoot.

Doubts about the efficacy of the laws are born out in numerous studies, one of which in the American Journal of Public Health, which finds that HIV exposure laws do not significantly influence peoples’ decision to disclose an HIV-positive status or change their behavior. The laws may actually deter people from ever even getting tested and knowing their status, contributing to HIV’s spread.

“What’s the benefit of knowing your status if you are going to be prosecuted for engaging in sexual behavior?” said Dr. Lightfoot. “Our current arguments around HIV-testing are that you can get treatment and live a long life. Criminalization overpowers these ideas,” she adds.

Of course, knowing one’s status can decrease the risk of HIV transmission. HIV-positive people can access treatment that lowers viral loads, decreasing the risk of passing the virus on, and they can also take precautions to protect their partners and stem the spread of the disease.

Furthermore, while most agree that someone intentionally transmitting HIV to another should be punished, situations in which someone intentionally exposes and infects another are very rare.

“There’s an assumption that any time a person who is HIV-positive has sex, it’s risky sex,” said Dr. Lightfoot. “When we demonize folks, we lose track that most HIV-positive folks are doing what they can to prevent transmission.”

There are ways the laws could be modified, says Professor Wolf. “What we could do is improve [the laws] so you account for public health messages and do not punish somebody for engaging in safer sex.”

But as they stand now, the laws serve to mainly add fuel to the firestorm of fear around HIV and the spread of the virus itself. “It’s amazing how much bias, misinformation and stigma is still out there,” says Professor Wolf. “It’s amazingly frightening.”

Originally posted at The 2×2 Project.

The Impact of AIDS Activism: An Interview with David France

How to Survive a Plague, an Academy-Award nominated documentary released in the fall of 2012, chronicles the start of ACT UP (AIDS Coalition To Unleash Power), an AIDS activist organization that was started by newly diagnosed HIV-positive individuals and their advocates in New York City in 1987. The film details how ACT UP grew from a small, local, grassroots initiative aimed at forcing the public to acknowledge the epidemic and its devastating impact, to an organization with thousands of members that transformed AIDS drug policy. Through political action including 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. By including footage from ACT UP activists and interviewing organizers who became lifelong advocates in the fight against AIDS, writer and director David France crafts a compelling storyline underscoring how the movement opened the eyes of the public to the struggles of those with HIV/AIDS and how ACT UP’s unrelenting demands for government acknowledgement and action changed the landscape and future of those diagnosed with the virus from a death sentence to a manageable, chronic disease. Mr. France discusses the development and evolution of the film and helps articulate what viewers can take from it.

You wrote extensively about HIV and AIDS for publications like New York magazine, and other writings of yours have inspired films. What was it that compelled you to take on the task of writing and then directing a film about the history of AIDS activism as opposed to staying in the writer’s chair?

I wanted to go back and look again at those years before 1996, and revisit them in order to try to make some sort of sense about what happened then. To mine those years for the lessons; the legacy; for a deeper understanding about what it meant that we’d all been through such a dark period of plague at a time when so few people were paying attention to it. That was my challenge.

The first thing I did was return to some of the videotape that I knew existed because as anybody who was doing reporting on the ground back then knew, cameras were everywhere—people with AIDS and their advocates, activists and artists, family members, and independent news gatherers were all shooting. That was all made possible with the arrival in 1982 with the revolution of the prosumer video cameras. They were suddenly available, and suddenly cheap, and they were taken up by this community in a remarkable way.

So I went to look at some of the tapes; there is a collection at the New York Library of some of the video work produced by ACT UP itself. And then I thought, you really can’t tell the story without the cameras, because the cameras played such an integral part. In fact, the camera itself was kind of a character in those years. And I thought, I’m actually looking at the project—the project is in trying to tell the story and make sense of it by going back and actually re-purposing those images for future generations.

Was the footage of ACT UP readily available to you? What surprised you most about the footage that you found and how did you decide which footage to use?

There’s this collection at the NYPL, which is really important. It’s a small collection relative to what was shot at the time. So the work I began first was to look at all the video the library had, to see what it did and what it didn’t cover, who surfaced as the most visible player in the footage that the organization itself was shooting. And then, who else was shooting? And you could see from the footage that every time a camera panned, you [saw] other people with cameras. That began my mission—to find those people. I was zooming in on them, blowing up their faces, sending their images everywhere trying to find anybody who was in the organization who might have known them, or knew people standing next to them, and then as I got closer—were they alive? Had they survived those years? And then if they had—or if they hadn’t—try to locate their archives. And that was really painstaking. It went on for three years; it was like detective’s work.

Ultimately, everybody I looked for I found, but one. Many of the people I found had died, but their libraries had been preserved, or at least put on a shelf, or in a storage unit or attic. But they were someplace. They were attainable. But there’s one person who died in 1989—best as anybody could remember—and although many people knew him, nobody really knew anything about his life. Who was his family? No one knew. Who took care of him in the last weeks? No one knew. There was so much death that it was impossible to keep track of those really important details, if you think about it from today’s perspective. But back then the only important detail was that he lost his battle. That was a frustration, not being able to find his work. I had a third or fourth generation copy of one of his tapes and used it, and it was brilliant. But I wanted to see what else he had, and I also wanted to look at the first generation, the master tape, to see how much of the image was still vital and vibrant, and how that could improve the storytelling.

Early AIDS activism was very well documented, in films, photographs and writings done by the activists themselves—31 videographers were credited in your film—more so than other social and political movements. Do you think this was done to help magnify the cause—a strategy, if you will—or did the activists do this more for themselves? Or both?

It was all of that plus more. It was possible to live in New York in the worst, worst years of death and plague, and not have any idea it was happening. And that’s because the news media was ignoring it.

It’s also because back then—in a way that’s hard to really wrap your heard around today—gay men and the gay and lesbian community was so isolated. And disenfranchised. We literally lived in ghettos. There were areas where you could walk across the street and realize you entered a gay neighborhood. And things could happen in that neighborhood that folks on the other side of the street would have no idea of. It was like shtetl living. And so when AIDS hit, concentrated in those neighborhoods, concentrated in those buildings, concentrated in this tight community, [it was] in a way that made it really, really possible to just ignore it if you had nothing to do with that community. And so there was no storytelling. There was no historicizing. There was no acknowledgement of all the lives that were flickering out. And that was one of the first impulses [in using film]. To make sure that people’s existence on earth had been memorialized.

When activism started taking foot, the activists starting using it as an activism tool. To do what they called police surveillance, for example, which is being done a lot now. The cops later started shooting the demonstrators, so there was this two-way camera thing going on, which still goes on now in public protests. And that was the first time that was used, and they used [footage] in court cases. There was a lot of police brutality, a lot of injuries; and those tapes became really essential evidence.

And there was something else that was happening. AIDS activism was really pushing up against something that was immobile. A society that hated gay people, a healthcare system that was broken at its core, and a virus—at a time when nobody had made any real progress against a virus. Virology, at least in the pharmaceutical area, was brand new.

So there was really no expectation, initially, of victory. But there was something life-giving about the battle. A lot of the images were shot in a way to say: ‘Look how fierce you are. Look what we’ve done. Look at the kind of life we represent, out in the streets screaming, or climbing up buildings.’ And then that was shown back to the community the next week, as a kind of a newsreel. As in: ‘This is what happened last week, this is you. You did this. You didn’t just sit around at a hospital bedside. You did this.’ And it was empowering, and suggested just through the images that something was being done even if no progress was being made, at least initially.

The last category is the artists. People like Ray Navarro [a conceptual performance artist who documented the epidemic and dies of AIDS in 1990], whose artwork it was to comment on life in the middle of a viral pandemic, in a way to try to make sense of it, and to take those remarks to a larger plane. And all of that stuff was left behind in various states of completion.

What do you think is different about the evolution of AIDS activism as compared to other grassroots advocacy efforts, based on what you’ve now discovered?

Well, [ACT UP] very knowingly and consciously built the movement on the shoulders of feminism and the women’s health movement before them, and the civil rights movement before that, and the anti-war movement. They took lessons, they studied; they had reading lists to try to understand what came before and how they could use those aspects to move forward.

They brought some things new and innovative to the battle. One was this sort of wicked, dark sense of humor. The anti-war movement had a sense of humor but nothing like AIDS activism. That was a kind of brilliant thing. It suggested that in fighting for their lives, they were fighting for an extraordinary kind of life, kind of a Technicolor existence. Not an ordinary existence, something richer and brighter than that.

The other thing they innovated is what they began calling the inside/outside approach, which may have been used in other movements in certain areas but had never been a central aspect. In ACT UP, [the ‘inside’ element] was the idea that there were people who learned the language of the folks they were struggling with and then mastered the principles of whatever the issue was, in this case the fundamentals of science. And the ‘outside’ wing used its force to pry open the doors and let the kind of ‘inside’ forces in. And they worked in tandem very effectively for many years. That’s a model that might serve in the work that Occupy took on a year ago. In that area, you at first see them out in the streets saying ‘we’re an oppositional movement,’ and then if you can’t develop anything more than the opposition you see it fizzle. That’s where this model that ACT UP came up with is a powerful paradigm.

You were living in New York City in the 80s and 90s; how did working on this project change your perspective of the events of the 80s and 90s?

I don’t know that it did. I don’t know that my perspective is changed on it. I think what I hadn’t known before I started on it was the central role that activism played in bringing us to the end. I don’t think that had ever been written about. It’s not that it was a piece of knowledge or history that was shared by only a few people—I don’t think it was ever detailed and described before this film. And that surprised me. That something as remarkable as that and history-changing as that had gone uncelebrated.

What do you see as the biggest issue facing firstly AIDS patients, and secondly AIDS activists, in today’s political, social, and medical context?

Probably one of their biggest issues is trying to mobilize people. There’s an apathy around AIDS that is really formidable. And a lot of it has to do with the fact that it’s no longer what it was in the U.S. in the ‘80s and ‘90s. It’s no longer a marching death. It doesn’t have to be. The issues are different and a lot less urgent—or seemingly less urgent. Although, for the majority of people with HIV in the world, life today after infection is exactly as dark and disastrous as it was back then in New York. [Editor’s Note: 95 percent of all AIDS cases occur in the developing world; over 80 percent of all HIV infections today are due to heterosexual intercourse. The rate of death from AIDS in the United States is 2.7 per 100,000 people. In developing countries, the rate of death from AIDS varies from nation to nation, but the World Health Organization reports that HIV/AIDS is the third leading cause of death in low-income countries compared with not even being in the top ten causes of death in high-income countries.] But the problem is mobilizing public will around trying to mandate a solution to that. The solution is very simple—get pills to people. And the medication’s prices dropped so dramatically thanks to activism over the last fifteen years. You can treat people for under a dollar a day and keep them alive like we’re keeping people alive in this country. Which is not perfectly, but it’s not a death sentence with a prognosis of 18 months.

So how do you get people to do that? I don’t know. There are people who are trying it; organizations on college campuses mobilizing students into global activism around AIDS drug access and that’s pretty cool. I think in a way we’ve started to think about AIDS a little bit more in the last year, talk about AIDS a little bit more in the last year. I like to think that the film had a little something to do with that.

How do you see ACT UP being used as a model for activists, health-focused or otherwise? What do you see as the important takeaways, positive and negative, from the organization’s history?

I think we’re seeing people use that model all over the place. Certainly Occupy began by using that model. They knew when they were beginning that this was a model that they were building with. The Arab Spring used aspects of ACT UP organizing techniques, around the planning of the protests in Tahrir Square, for example. In the pro-democracy movement in Russia they are very specifically looking back at AIDS and AIDS activism and ACT UP specifically for strategy ideas for how to continue their battle, which is actually kind of culturally similar in a way to what AIDS activism was like 25-30 years ago. You know, they’re using really clever ideas. Protesting is banned [in Russia]; they’re not allowed to protest the government, so they’re doing things that are protests that have confused the cops. Like flash mobs, like the Pussy Riot thing, they’re all geared towards creating this sense of inevitably around their movement and progressivism. And all of that is ACT UP-ish and it’s fun to see. And I do know that they’re showing How to Survive a Plague in underground screenings there as part of their strategy sessions; they’re taking it apart action by action, conversation by conversation.

The film covered some of the internal strife that ACT UP went through in the 1990s. Do you think those kind of organizational issues are somewhat inevitable among activist groups?

I think they’re probably inevitable. I’m not a student of grassroots organizations in general. But what I think is more remarkable is that they held together for so long, from 1987-1992, five years in this massive operation that involved thousands and thousands of people without a single paid staffer. Without any formal organizational structure. Without even shared strategy ideas. You could have your own strategy and still function within the group if you had other people who were willing to work with you on it. You could adopt whatever subject interested you as long as it was AIDS related. The meetings would draw a thousand people, on Monday nights. And that was remarkable.

So, yeah, they hit a wall in ’92 and people are still bruised about that. I see all these arguments online. And they’re still re-fighting those fights from ’92 to ’93 to ’94. And they were some ugly, ugly fights. Some people think there was infiltration, some people think it was just that finally the personalities of the individuals became so fermented that it was impossible to bridge those differences. But for me, what’s more important is what came before the split.

Were there things that you wish had made it into the film that had to be cut or did not fit in with the evolving narrative that you wish had been captured on screen? What was omitted and why?

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.

And I just couldn’t find the room to include everybody in the piece. And that made me feel irresponsible and guilty, and it just made me wish that there were a way to tell a movie using that cultural form in a way that could do honor to everybody, but I wasn’t able to figure that out.

Originally posted at The 2×2 Project. Revisiting this piece was particularly moving for me – especially given the role political activism has taken in our political landscape over the last year. David France recently released a book by the same name.

The Staggering Incidence of Breast Cancer in the Bay Area

Check out this piece in Tuesday’s edition of my hometown paper, the San Francisco Chronicle, discussing research by the Public Health Institute on the bizarrely high incidence of breast cancer in Bay Area counties. It’s fascinating. Marin County has for years been considered a hotbed for this disease, without much explanation as to why, but now it seems that multiple Bay Area counties – with the exception of San Francisco County itself – are showing similar rates. No research was undertaken in this project to determine why, but getting a handle on which regions have the highest incidence rates is a good first step for further exploration.

This image shows the counties and regions in which invasive breast cancer is 10%-20% higher than in other parts of the state – two other regions were seen with similar incidence rates in Southern California:

Picture copyright of San Francisco Chronicle

Juvenile Detention Centers Miss Key Health Indicators for Girls

I listened to a great NPR report this afternoon by Jenny Gold about juvenile detention centers and how they’re missing some key indicators of the health status of girls that enter into the system. As someone specializing in adolescent girls’ health, I was pretty fascinated – it detailed the personal experiences of a few girls being seen in a New Mexico facility and also tried to address ways it could be rectified. Detention centers can actually be helpful entry points for girls and young women to be connected to healthcare resources (we’re talking mental and physical health, so everything from counseling to substance abuse help to medical attention if they are victims of assault or violence or have seen physicians only irregularly).

One of the biggest issues facing these girls was confidential disclosure of their health status and any social, emotional, and physical issues they were facing. Developing rapport with a provider at a detention facility can be difficult in and of itself, but the girls reported having to answer personal questions in an open-door location, often with men and boys – staff or other teens – present; unsurprisingly, this made it difficult for many girls to feel that they could answer questions of a personal nature (sexual behavior, drug and alcohol use, history of assault, abuse or violence) honestly and openly. What we do know about these girls – 41% have vaginal injury consistent with sexual assault, 8% have positive skin tests for tuberculosis, and 30% need glasses but don’t have them – shows that getting all of this information early on is essential for appropriate and timely care.

One proposed solution to this – getting as much information as possible from these girls about their health status and the best ways to then help them, treat them, and connect them with resources – was to have them fill out a survey themselves. Currently, girls are asked 35 questions by an intake nurse when they arrive, that cover things like current medications, alcohol or drug use in the last 24 hours, and whether they have a history of self-destructive behavior. The proposed survey in the New Mexico facility is 132 questions, and according to one facility employee the time that would take is just not feasible given the traffic and business of the facility. Researchers and providers implemented a pilot study of the survey for 30 girls at the detention facility.

Of course, I can’t comment on the actual level of frantic activity in the specific facility at hand, but I can say that having a questionnaire that catches health issues which can be immediately and effectively addressed can prevent a host of issues from getting worse as time goes on without treatment – potential injuries from abuse or assault, needing STI screenings for victims of rape or girls who are sexually active without access to contraceptives or regular gynecological care, and of course mental health resources and immediate connection with social workers or therapists for those girls in need. Either having the girls fill out the survey via computer themselves or having a nurse help them would also be enormously helpful in the long run. This can also be a great way to track the care progress of these girls over the years, as many go in and out of detention centers. For girls who have experienced assault or abuse or multiple infections and injuries, this can be an easy way to follow-up with them without having to go through essentially baseline assessments of their well-being every time they enter a facility.

Some of the sobering stats about the girls from this particular New Mexico facility from this report: Of the 30 girls who participated in the piloting of implementing this survey, 12 needed immediate medical care, and 23 were coded as needing medical care within 24 hours, based on the survey’s questions. Intakes without this survey missed essential things, like burns on one girl’s torso and chest.

Check out the whole report here. I have no doubt that detention centers are in dire need of additional resources and likely way more staff than they have, for more than just this particular issue of adolescent girls’ health, but if the issue is there being one nurse for multiple intakes, having the girls fill out the survey on a computer themselves – when they’re more likely to be honest than in discussion with a nurse anyway, seems like the best solution to these kind of initial entry screenings. Especially since poor physical health is an indicator of recidivism, increasing the likelihood of girls ending up back in a facility.

Countries Facing a Critical Healthcare Worker Shortage

A fantastic interactive graphic by the Guardian highlights which countries are in the most dire straits. Check it out here, and hover over a country’s name to get the statistics.

Some of the facts I found most interesting:

The Democratic Republic of the Congo has one physician and five nurses per 10,000 people and the infant mortality rate is 199 deaths before age five per 1,000 births.

Tanzania has less than one physician and two nurses per 10,000 people and an infant mortality rate of 103.

Chad also has less than one physician and three nurses per 10,000 people, and an infant mortality rate of 209.

Highest infant mortality rate? Afghanistan.

Check it out.

How Public Health Works to Save Lives

I love infographics, as regular readers of this blog know. Today, the American Public Health Association came out with a great one showing the intersections of public health and how various initiatives, supported by policy, save lives and money. Prevention is key!

Courtesy of APHA

Scientific American: We Are Getting Fatter and Drunker

Scientific American released a couple of interesting interactive graphs and infographics showing the rise of poor health behaviors among Americans, focusing on the changes between 1995 – 2010. Pretty interesting findings – overall, Americans are drinking more heavily, binge drinking more frequently, and overeating more regularly – but we are also smoking less, overall.

Vermont was the worst state for heavy drinking in 2010 (Tennessee had the fewest heavy drinkers), Wisconsin was the worst for binge drinking (Tennessee again had the fewest!), West Virginia was the worst for tobacco use (Utah had the fewest smokers), Mississippi was the worst for obesity (Colorado had the lowest obesity rates), and Oregon did the best in terms of exercising and physical activity (Mississippi was the worst).

You can toggle between health behaviors divided by regions in this piece, and here is the infographic showing the trends:

Image via Scientific American