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.

Making the Cut: Is It Time to Put the Circumcision Debate to Rest?

Circumcision is not a new practice – it is most notably well known as a religious practice in many communities. But its implementation for public health purposes has been controversial. Raising ethical concerns and questions of tractable population health impact, the procedure has gained increasing attention in the past couple of years as it treads on unprecedented ground—surgery for the prevention of infectious disease.

Research in support of circumcision as a protective measure against the spread of HIV and other sexually transmitted diseases is mounting, countering concerns of its potential risks. [Most recently, the American Academy of Pediatrics officially articulated that the health benefits outweigh the risks – though the decision should be left to parents, as those benefits aren’t marked enough to warrant a blanket recommendation.]

The circumcision debate turns largely on biological, behavioral, and relational factors – and these are the elements to keep in mind when thinking of [voluntary male medical] circumcision in the context of HIV. Particularly in developing countries.

Biologically speaking, the foreskin is the ideal environment for bacterial and viral infections to flourish. Heat and lack of oxygen facilitate the growth of pathogens. When the inner foreskin is retracted during heterosexual intercourse, for example, it is exposed to the vaginal secretions of a female partner, which if carrying HIV and other sexually transmitted infections easily fosters transmission. A 2009 study indicated that the greater the size—and therefore surface of—the foreskin, the higher the incidence of HIV in an infected male, underscoring how it can be a breeding ground for the virus.

A recent study conducted by Dr. Ronald Gray of Johns Hopkins University, in which researchers followed Ugandan adult study participants after a circumcision intervention, showed that the subsequent risk of acquiring HIV was reduced for the 40-month follow-up period. In addition, circumcision decreased the viral load of high-risk human papillomavirus—the strains that can cause penile, cervical and anal cancers—in men.

Other studies have shown significant reductions in bacteria after circumcision, which also benefits the female partners of the men. Adverse events or complications appear to be rare in both HIV-positive and HIV-negative men who undergo the procedure, with one study documenting moderate-to-severe complications occurring between 3-4 percent of men regardless of HIV-status.

Behavior change also features prominently in the circumcision debate. Opponents of circumcision express concerns that the procedure may contribute to a perception of immunity against HIV and result in the reduction of condom use. Additionally, there is a question of whether or not it may increase the number of sex partners one has, for the same reason of rationalizing post-surgery invincibility.

Many circumcision interventions studies are not so cut and dry, so to speak. A number contain significant education components, which makes the procedure’s contribution to HIV risk reduction less clear.

One study examined the length of time men who had undergone circumcision waited before engaging in sexual activity. If a man HIV-positive, the risk of infecting a partner is notably higher if he engages in sexual activity before the wound heals, highlighting the importance of the quality of the surgery to minimize healing complications and the importance of concurrent education to delay sexual activity. Since a 2008 study showed that after 30 days, 73% of HIV-positive men had healed wounds, compared to 83% of HIV-negative men (the discrepancy owing to greater time HIV-positive individuals may take for any kind of wound healing), this is of particular importance.

It seems that being married, not single, might diminish concerns about the length of time it takes wounds to heal. There was no statistically significant difference in time waited to engage in sex post-surgery between HIV-positive and HIV-negative men who were married; nearly 28 percent and 29 percent, respectively, engaged before the wound healed, which is the single greatest cause of post-procedure complications. However, among single men, roughly 13 percent of HIV-positive men resumed sex before their wound was fully healed, compared to about 6 percent of HIV-negative men did.

The significant difference between the single HIV-positive men and the single HIV-negative men underscores the potential for altered beliefs about post-circumcision HIV transmission. However, HIV-positive men reported more sexual partners and less consistent condom use than the HIV-negative men throughout the study—itself underscoring the difficulty of risky behavior change. Encouragingly, condom use among HIV-positive men increased over the course of the study.

The relational impacts of circumcision have also been examined. Researchers have assessed the perceptions and opinions of the women in relationships with those who have undergone the surgery. A 2009 study indicated that women whose male partners were circumcised were either more sexually satisfied than they had been previously, or felt no difference. Thirty-nine percent of women indicated more satisfaction, 57 percent noted no change, and less than 3 percent said they were less satisfied than they had been when their partners were uncircumcised. The greater satisfaction, according to the women, was primarily attributed to better hygiene.

These results are important, as one of biggest issues around circumcision is “the sell.” The best way to make that sell, researchers argue, is to have the female partners articulate their preference for and encouragement of circumcision to their male partners. It appears that there may also be a generational difference in the acceptance and uptake of the procedure. Dr. Gray and his colleagues have found that adolescent males disproportionately access circumcision procedures. Even some fathers who encouraged circumcision in their sons refused the procedure themselves.

Precautions are of course essential. Research has shown that it takes practitioners approximately 100 circumcision procedures before they can be considered adept at performing the surgery.

And not all the research being done has produced promising results, specifically for women. While some studies suggest that HIV-discordant couples—HIV-negative woman and HIV-positive man—benefit from circumcision and the procedure prevents infection of the woman, other studies have produced conflicting results.

Biologically, the circumcision seems to benefit primarily men, in preventing the contraction of HIV from an HIV-positive female partner. The same is not necessarily true for HIV-negative women whose male partners are HIV-positive. This biologically higher risk of infection for women is well known among public health researchers. Of course, decreasing the prevalence of HIV-positive men will ultimately, in the long run, help to lower the HIV incidence in women.

Indeed, population health benefits are already emerging. Dr. Gray and colleagues showed earlier this year that in Uganda, 37 percent of the reduction in HIV incidence could be attributed to circumcision, since there was no change in risk behaviors. The impact was not observed in women.

Circumcision seems to make economic sense. The male circumcision procedure costs $30-$60 in adults, and $5-$10 in infants. For each HIV infection avoided due to five to 15 male circumcisions performed, the savings reach well into the billions of dollars with the assumptions of a $150-$900 cost per infection (depending on HIV incidence in a specific region) over the next ten years.

Critics of course remain, and most vocally claim that other strategies, like education and behavior change, are viable solutions that should be championed. Regarding the sustained HIV epidemic and the hopeful strategies of condom use, testing, and treatment, Dr. Gray himself remarked, “I don’t know how to change behavior, I wish I did.”

So while behavior change strategies are perhaps the most important intervention to counter the HIV epidemic, they are not the only effective HIV interventions. The evidence seems to indicate that voluntary circumcision also makes the cut as a contender in the global fight against HIV.

Originally published by The 2×2 Project.

The Health Implications of Sex-Selective Abortion

Anyone paying attention to the election this past year—or, frankly, even those who tried to avoid it—has at least a superficial understanding of what the abortion rights argument looks like in the United States.

But the long-term population health outcomes of abortion are generally not considered as part of the argument. That’s because when a woman terminates a pregnancy in America, the decision is rarely made based on the sex of the fetus. However, in many developing and growing countries, that is at the crux of a woman’s decision—and the significant shift in gender representation is changing their population health status, and perhaps even the picture of the burden of disease. One of the countries in which this is most evident is China.

Interestingly, and likely unsurprisingly for those invested in a woman’s right to choose, we see that sex selection is itself a manifestation of the gender inequities in economic and social standing in many of these countries—not so different than many of the reasons cited by women in the U.S. seeking abortions. So while the outcomes of sex-selective abortion abroad may pose different problems, it should be acknowledged that the need for abortion is rooted in similar circumstances around the globe.

This issue is addressed by one of the few research studies to explore the ramifications of China’s one-child policy, published in the New England Journal of Medicine (NEJM). China is a prime example of the increase in the male population due to women terminating pregnancies that were discovered to be female, a practice deemed illegal but nonetheless carried out widely.

The ratio of male to female live births in industrialized countries generally ranges from 1.03 – 1.07 (103,000 – 107,000 boys born for every 100,000 girls born). In China, since the inception of the one-child policy, the ratio has risen from 1.06 in 1979, to 1.11 in 1988, to 1.17 in 2001 (117,000 boys born for every 100,000 girls). Some regions show even higher numbers, with the Anhui, Guangdong, and Qinghai provinces reaching ratios as high as 1.3 (meaning that for every 130,000 boys born there are 100,000 girls born).

There are distinctions between urban and rural areas as well, since couples in rural provinces are generally allowed to have more than one child. The sex ratio comes in high at 1.13 for the first birth in urban regions, since one child is usually all a couple will be allowed. It peaks at 1.30 for the second birth (130,000 boys born for every 100,000 girls), which if couples are allowed to have, the preference is clearly male. This contrasts markedly with rural areas, in which the ratio for the first child is normal at 1.05 (105,000 boys for ever 100,000 girls), indicating that sex-selection is not a huge issue since rural couples are allowed a second child. However, the ratio sharply increases at second births, reaching 1.23 (123,000 boys for every 100,000 girls).

(Recently, China has noted that their thinking may be changing in regards to the one-child policy, with the possibility of extending the two-child allowance to everyone.)

This has unsurprising impacts on the health of the population. Some of the more pressing concerns noted by researchers that they articulate as a result of there being fewer women to marry and partner with include mental illness and socially disruptive behavior issues in men. Recently, studies have begun to document these trends, underscoring the significant long-term consequences of this gender imbalance. One recent study showed that even after adjusting for age, education, and income level, unmarried men in China were more likely to have lower self-esteem, higher depression, higher aggression, and more likely to have suicidal thoughts or actions than married men—at statistically significant levels.

The findings of another study, comprised of interviews conducted with people in China born just before and just after the implementation of the one-child policy showed similar results. Researchers found that the policy itself had created a less trusting and less trustworthy population, who are more risk-averse and less competitive, more pessimistic, less conscientious and even more neurotic. The impact of anti-social behaviors in a predominantly male population seems to be shifting the mental health profile of the entire nation.

More concerning as a result of sex-selective abortion and a decrease in the number of women available for marriage is the increased in trafficked women, and the subsequent increase in the number of commercial sex workers. Researchers note that a broad range of high-risk sex behaviors are often demanded by the surplus male clients, increasing the incidence of HIV and other sexually transmitted infections. This alone has been noted as having a likely significant affect on the spread of HIV throughout China, posing a major national public health threat for the country.

The health implications aren’t limited to reproductive health and mental illness. If it is in fact accurate that most of the children living in China’s orphanages are girls, it is unclear how the future healthcare needs of these girls as they age into women will be handled and by whom, with a rapidly growing aging population already relying heavily on the significantly less populous younger generation.

Critics of abortion—sex-selective or not—often cite mental health issues and resulting regret as major reasons why women should not get abortions. So what about the health status—physical and mental—of the women who have these procedures?

Recently, public health researchers have worked to create the first body of scientific literature answering these very concerns. A group of University of California, San Francisco researchers at the group Advancing New Standards in Reproductive Health (ANSIRH) recently presented some of the findings of their longitudinal research known as the Turnaway Study. They found that women who were seeking abortions and who were denied were more likely to have slipped into poverty a year later, more likely to be on public assistance, and less likely to have a job. There was no correlation between abortion and drug use, or abortion and depression.

Abroad, given that sex-selective abortion is usually a procedure performed by private providers due to legal restrictions, tracking this kind of information is extremely difficult. And while this research was limited to the experiences of American women, the results showing decreases in economic status and increases in reliance on some form of public assistance, if available, certainly seem like potential outcomes in countries with worse statistics in terms of gender equality and economic growth.

Is there a solution? The gender imbalance, and therefore the changing prevalence of certain diseases, will not balance out unless sex-selective abortion is essentially made impossible, but it is imperative that the issue of sex-selective abortion not become a rallying cry to end the right to the procedure overall for women. As seen by the work done by researchers in China and the findings by UCSF researchers, the issues surrounding the choice to have an abortion, whether in the United States or abroad, are complex and inextricably linked to the economic and social circumstances of the women.

To tackle the burgeoning disease differences emerging from the sex-selective abortions, the work must begin by tackling the fundamental issues regarding the reasons why women seek these abortions in the first place.

Originally published at The 2×2 Project.

Can the Pill Alleviate Depression?

The use of oral contraceptives for purposes other than birth control is by now a normal practice. The pill is frequently prescribed to those suffering from severe and persistent acne, for the alleviation of severe cramping and endometriosis, and for soothing the symptoms of premenstrual dysphoric disorder and premenstrual syndrome.

In fact, when asking women for the reasons they began using the pill, 82 percent cited non-contraceptive reasons as a major factor, and one third of teens use the pill solely for reasons other than preventing pregnancy.

Of course, the use of the birth control pill at all—for the prevention of pregnancy or other reasons—has unnecessarily become the center of heated political and social debates, despite the fact that millions of American women rely on it. The ability for women to access oral contraception has become increasingly contentious in recent years, with legislators working to outlaw them entirely. So, the mention of another potentially promising side effect of the pill may be immediately—and unfortunately—rebuffed.

And yet, it seems there may be another non-contraceptive reason for using oral contraceptives—the prevention of incident depression and suicidal ideation in young women. While opponents of birth control may claim that there are existing medications for the treatment of depression, the findings of this new research detail even more compelling reasons why oral contraception may benefit the health of women.

According to a study published in this month’s American Journal of Epidemiology by researchers at Columbia University’s Mailman School of Public Health, the steady hormone levels provided by the pill may reduce the risk of depression and suicide attempts in young women. Only a handful of studies have explored this relationship in the past. Two studies in the past decade and half showed no positive or negative effect of hormonal contraceptives on depressive symptoms, while another showed that those using oral contraceptives had reduced depressive symptoms.

“We have long believed that sex-linked hormones such as estrogen are important predictors of mood problems, but little research has addressed how [external] estrogen regulation through hormonal contraceptives may or may not be associated with mental health outcomes,” says Katherine Keyes, Ph.D., lead author of the study and assistant professor of epidemiology at Columbia.

The study authors used a longitudinal—meaning the young women were followed over a period of time—nationally representative sample called the National Longitudinal Study of Adolescent Health (known as Add Health). The Add Health study began in 1992, with a total of 90,000 girls being surveyed about health behaviors in school. Subsequently, 20,000 of these girls were randomly selected for in-depth home interviews, and were given follow-up interviews in 1996 (known as Wave 2), 2000-2001 (Wave 3), and 2007-2008 (Wave 4).

A total of 6,654 young women, now between the ages of 25-34, who completed these interviews and indicated using contraception were used in this study’s analysis. The interviews assessed depression symptoms and previous suicide attempts among the women. At each wave, women were asked about symptoms of depression in the previous week and the symptoms were given a score based on their severity. They were also asked how many times they had attempted suicide in the previous year.

The findings produced compelling results. First, women who used hormonal contraception (birth control pill, the ring, or the patch) were more likely to be younger and have a college degree, less likely to have children, and more likely to engage in other protective health behaviors—like exercising, visiting the dentist, not smoking, and maintaining a lower body mass index.

Second, the women using hormonal contraception had lower scores of past-week depression symptoms, lower odds of high depressive symptoms, and lower odds of having attempted suicide in the last year. This was true even after the authors accounted for previous depressive symptoms among the women. When exploring the data longitudinally—that is, examining the association between contraceptive use and depression over the course of two waves of data to see if there were differences depending on the age of the women—the findings held true. Users of the pill, patch, or ring had lower odds of having high depression scores between the ages of 18-28, with even lower odds of a high depression score between the ages of 25-34.

Interestingly, hormonal contraception was not protective against a suicide attempts between the ages of 18-28, but it was between the ages of 25-34.

Dr. Kim Yonkers, professor of psychiatry at the Yale University School of Public Health and an expert on women’s reproductive and psychiatric health, praised the study.

“It’s certainly in line with what data are out there with regard to oral contraceptives, and I think the researchers did a nice job using the information that’s available,” she says.

There are limitations to the study. The authors acknowledge that women who perceive there to be negative side effects in their mood due to hormonal contraception are less likely to maintain its use, and these women may be more prone to depressive symptoms, potentially accounting for some of the findings and partially explaining the link.

As Yonkers says, “it could be a healthy observer effect. They’re talking to a group of women [who were using oral contraceptives] who are more likely to be healthy, to be psychologically healthy, to attend medical appointments; so it’s impossible to assign causality,” which she notes the authors are accurately not doing.

There are also a range of personal factors—like relationship status and sexual comfort—that contribute to a woman’s decision to use the pill, patch or ring, as opposed to using a barrier method such as a condom on its own, or no protection at all.

Hormonal contraception, as noted by the authors, is most commonly used among educated, cohabitating and unmarried white women. This is likely due to a few factors. College educated individuals are more likely to be fully employed and therefore have better health insurance, making the pill more affordable. There are racial disparities due to insurance as well, as white women are more likely to have health coverage than women of color. Funding for public and non-profit organizations that offer oral contraceptives at affordable and sliding scale prices for women without insurance are constantly under threat of—and actually victim to—major cuts in funding. It is unlikely that evidence for protective effects on mental health will ameliorate these differences since they are rooted in access and economics, but the implications of the study are still wide.

For example, Yonkers also points out the influence this study could have on regulations for prescription drugs.

“I think this adds to the body of literature questioning why oral contraceptives have to have this labeling that their compound increases the risk of depression. I don’t think we see that at a population level very strongly. No [older, randomized control] trials have found that oral contraceptives, even at a much higher dose, increase the likelihood of depression, let alone suicidal ideation or suicide,” she says.

This labeling may deter some women from using the birth control pill if they are particularly wary of its influence over their mood stability, when in fact it seems it may benefit mood or at minimum have no effect. The Federal Drug Administration notes that they label drugs based on data derived from human experience wherever possible.

As Yonkers says, “the FDA keeps mandating that this labeling be included on oral contraceptive agents—as a class labeling—despite the fact that we don’t see it in clinical trials. So I think it’s something that has to be taken up more carefully with the FDA.”

Whether data or politics will determine FDA labeling remains to be seen, but this study adds to the mounting evidence that the former should be more greatly weighed.

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.

America’s Most Vulnerable Remain at Risk under the ACA

At 26 years old, I found myself in a predicament—my job didn’t offer health benefits, I definitely couldn’t afford a private plan, and I didn’t qualify for Medicaid. I was uninsured.

This is hardly breaking news. But as a public health professional, I had always been certain that I would never be one of those without healthcare coverage—at risk for potential financial and emotional disaster were illness to strike.

Knowing I didn’t have insurance, my mind turned every stomach pain I had into appendicitis. Every headache morphed into a potential brain tumor. Every time I tripped on the sidewalk, I said a brief prayer that I hadn’t twisted my ankle beyond self-healing repair. But I was fortunate: I’m a fit young woman. I was able to buy healthy food and exercise regularly, I had no chronic health issues, and I obsessively look both ways before crossing any street. With these due precautions, and with a little luck, that uninsured phase of my life passed without any real incident (other than a little anxiety and hypochondria).

Others haven’t been so lucky. Here’s a snapshot of some of the more disturbing statistics about the health of Americans: One in three Americans are obese, and over 25 million Americans have diabetes. It’s no wonder then that 27 million Americans have heart disease. And it doesn’t stop with physical health: over 25% of Americans have a diagnosable mental illness.

It’s clear healthcare coverage is important in America, and 50 million of us don’t have it.

In that regard, the passing of the Affordable Care Act was a relief for many who needed affordable insurance. Young adults are now covered on their parents’ plans until they’re 26. Medicaid was expanded to cover many more Americans than it used to cover. Perhaps most importantly, insurance companies can no longer exclude people for having pre-existing conditions that precluded them from getting the coverage they needed previously.

While all this is wonderful, it’s clear that the law falls short in some really important ways. A startling 30 million Americans will remain uninsured—still unable to get the coverage they need.

First, there are the unemployed who will miss out on the main mechanism through which many Americans will get coverage—their employers. There are also the workers at companies with less than 50 employees who are in trouble because their employers are neither required to provide coverage nor penalized for not doing so. Insurance is expensive, and beyond feasible for many Americans who need it. And several states are balking at the ACA-offered Medicaid expansion package for political reasons, leaving more than just a few Americans without coverage.

Luckily, for those whose incomes put them at 133% – 400% above the poverty line (about $11,000 in annual income for an individual and $22,000 for a family of four), there will be some help from the federal government with state health exchanges, which offer subsidies to buy insurance from a range of plans in their states.

But those earning less than 133% of the poverty line are in a pickle. Not only won’t they qualify for these exchanges, but they’ll make too much to qualify for Medicaid—with annual income caps in some states, like Texas, as low as $5,000 a year.

The implications extend beyond adults to children in low-income households, as well. A family health insurance plan that covers children costs $4,530 a year on average, even with employer-sponsored coverage. So those folks without employer-sponsored insurance have to pay even more to insure their children—a very real struggle for low-income families. This predicament leaves many kids without any healthcare net. What’s worse, CHIP (Children’s Health Insurance Program), a state-run program offering coverage for children in families that make too much for Medicaid but who cannot afford private plans, is facing major funding cuts, forcing more children to rely on that family coverage from their already struggling parents.

The ACA was certainly a big win for healthcare coverage in America, by no means the fearsome healthcare pariah its opponents are labeling it. But it’s not the paragon its proponents suggest it is, either. And for the 50 million Americans who it leaves in the dust, that means the same fear and anxiety I experienced when I didn’t have insurance—fear and anxiety that no one should endure.

Originally posted at The 2×2 Project. Note: I waffled on whether or not to post this given the current health policy climate, but for the sake of essential comparison, it’s worth revisiting how the ACA was originally received – and how dangerous it is to lose its protections.

How School-Based Health Centers Can Help Save Our Kids

Thanks to my elementary school nurse, I finished school on time. That’s right: In the 5th grade, I strained during a school vision test to read the little letters I saw projected on a screen 10 feet away. Asking in bewilderment if I wanted to try again, the screener asked, “How have you even been seeing the chalkboard?” Off to the nurse I went to get my prescription recorded for her records, and glasses were ordered that day.

In the context of today’s school health services, my experience seems paradisal. That’s because today, public school health services are conspicuously absent. As a youngster, I never gave much thought to how the presence of that nurse or vision screener and her assessment impacted my uninterrupted performance in school. Given that we know academic success and wellbeing are inextricably linked, the low number of school-based health centers and staff is particularly troubling. Increasing the number of centers with fully staffed health professionals—nurses and school psychologists in particular—can greatly improve child health as well as academic performance.

The Affordable Care Act appropriated $200 million for the explicit purpose of building and expanding school health centers, a number that still seems low considering that only 45 percent of public schools have a full-time nurse, and 30 percent can only count on a nurse part time. A quarter of public schools have no nurse at all. A mere 12 states have met the Department of Health and Human Service’s desired ratio of one nurse for every 750 students.

The cost of a school nurse—the average salary hovers around $43,000 a year—and of equipping a center with supplies varies from state to state, and even county to county. If the ACA money were used solely on nurses, it would only allow 4,651 nurses to enter the field. After covering the staffing of public schools in New York City, Los Angeles, and Chicago we would be left with funding for a little over 1,000 full salaries—without even beginning to consider the cost of dedicating and maintaining a physical space in a school and procuring supplies.

Historically, school-based health centers have done everything from dispensing Band-Aids and cleaning cuts to providing immunizations, dispensing medications, and coming to the aid of children suffering from seizures. These centers have also offered preventive care and treatment for children who may not otherwise have access to health insurance. They can have a significant impact on what is known as the “achievement gap,” the major race and socioeconomic disparities in academic success that begin to emerge as early as elementary school, by working to address the health issues that have the greatest impact on a child’s performance in school.

An emerging body of research points to the ways in which these disparities could be drastically reduced, and preventive care restored, with the return of robust care being offered in house at our public schools.

The Journal of School Health devoted an entire issue to research by Charles Basch, Ph.D., of Teachers College, Columbia University, that highlights health issues with historically high socioeconomic, racial, and urban health disparities, how they contribute to poorer academic outcomes for minority youth, and how school-based health care can mitigate them. Children of color currently make up 85 percent of New York City’s public school system, one of the most racially segregated in the nation, and Basch’s research outlines seven health problems that can be easily addressed by a school nurse within these segregated environments and help reduce the disparities.

The least contentious health issues addressed are asthma, vision and nutrition. The prevalence of asthma among black children in the United States is 12.8 percent versus 8.8 percent for white children, and the annual estimate of asthma attacks among black children is 8.4 percent compared to 5.8 percent among white youth. Poorly controlled asthma can impact cognition and plays a significant role in absenteeism; the overuse of emergency departments and underuse of effective medications among minority youth are a good measure of how the affliction is having greater negative consequences for children of color.

As someone who needed glasses fairly young, it’s unsurprising that more than a fifth of youth have vision problems. A national sample of nearly 50,000 children showed those from low-income families were less likely to have vision diagnoses than high-income children. Once diagnosed, black children have less intensive and sparser care than whites. And everyone knows that breakfast is the most important meal of the day, but one study showed that among 9-year-old girls over a three-day period, 77 percent of white children had breakfast every day while only 57 percent of black children did. Of children qualifying for reduced or free lunch in their public schools, less than half participated in schools’ free breakfast programs for which they were eligible. Nutrition influences brain activity, which results in significant impacts on children’s learning and cognition.

There are uncomplicated solutions to these problems. Asthma screenings are quick, and medicines are immediately effective. Dealing with symptoms and management of asthma at school can decrease both absences and severe attacks. Vision screening is widespread in schools, but the coordination of follow-up care by a school health professional is essential for children in need of eye-care interventions and is the biggest culprit behind current disparities. Participation in universal school-breakfast programs has shown reductions in absences, and allowing children to eat breakfast in their classrooms as opposed to the cafeteria has resulted in increases in the programs. School-based health centers can oversee the distribution of healthy meals for children in need of these programs, with the added perk of highlighting which students may benefit from other school-health services.

Attention deficit and attention deficit hyperactivity disorders (ADD and ADHD) have received much attention in recent years. ADD/HD affects sensory perception, absenteeism, cognition, and even organizational and planning skills. Urban youth of color are more likely to be affected by and less likely to receive a correct diagnosis and effective medication. Screenings by school psychologists and learning specialists can aid in the diagnosis of ADD and ADHD and the accessing of medications, as well as help students with effective behavioral modifications. School nurses are in a position to manage the medications by dispensing them to students at school if necessary, and ensuring that the timing and dosage are accurate.

Most contentious of the issues tackled by Basch in his call to arms is teen pregnancy. Among 15- to 17-year old girls, the pregnancy rate among blacks is more than three times higher than whites, and the rate among Hispanic teens is more than four times as high. Teen mothers on average have two fewer years of schooling. They are 10-12 percent less likely to finish high school, and have 14-29 percent lower odds of attending college. The implementation of evidence-based, comprehensive sex education is the best way to reduce the teen pregnancy disparity. This requires the overhaul of the popular abstinence-only education programs, which have been shown to leave students ill-equipped to make the healthiest decisions. Given the fraught political environment, comprehensive sex education is not widespread, and school nurses can be an essential resource for students beginning to engage in sexual activity. From dispensing condoms to connecting students to community resources for treatment who may disclose concerns about both pregnancy and sexually transmitted infections, and being the person on campus who can answer questions privately about reproductive health, nurses can address issues that are not part of classroom learning.

There are signs of hope, as Basch was asked by Secretary of Education Arne Duncan to outline national health strategies in schools, but the now well-known public funding cuts to both healthcare and education continue to threaten the health status and educational attainment of youth in America’s public schools.

The disparities can be shocking. But these specific health issues are fairly straightforward, do not require specialists, and can be tackled easily within a school environment by nurses, resulting in the improvement of both kids’ public health and academic achievement—as long as they are given the finances and support to do so. As a front line of defense against immediate health emergencies and the prevention and maintenance of chronic diseases that develop in elementary school years, ensuring the presence of fully staffed, funded, and stable school-based health centers is essential—most especially for our children already victim to a shameful lack of resources.

 

Originally published at The 2×2 Project