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

The Declining Mental Health of Millennials: Is Depression the New Normal?

It is a familiar sight to see a group of teens bent over phones or gaming devices, checking in, tagging each other, posting pictures and commenting, and waiting impatiently for all their cyber friends to ‘like’ their work, or re-tweet their location, or post an accompanying video.

Teenagers today are some of the most enthusiastic users of social media sites like Facebook, and as an age group their Internet use is near universal—a full 95 percent of teens are now online.

This trend has provoked anxiety, raising a range of concerns, from sex predators to promoting a sedentary lifestyle. Less noticed has been the effects of heavy media use on mental health.

But just as teen internet use has risen in recent years, teen depression and psychopathology has risen five-fold since the early part of the 20th century.

This relationship has recently been of concern to psychologists and psychiatric epidemiologists. Dr. Jean Twenge, a professor of psychology at San Diego State University, has been one of the most outspoken in her field on linking these two trends.

As she says in her recent book, The Narcissism Epidemic: Living in the Age of Entitlement, rising rates of depression are partly the result of a culture that promotes the narcissism pulsing through social media usage.

Americans—especially teenagers—now rely so much on external and immediate gratification, social status and image, and the superficial gain they get from social media that they are forgoing values that contribute to a sound internal life—like strong communities built more on shared goals than on individual success, and the pursuit of activities that provide internal satisfaction, Dr. Twenge says.

Eight percent of 12-17 year-olds in the United States experienced at least one major depressive disorder in the past year. While some have argued that this is simply the result of greater recognition and diagnosis of the illness than in the past, Dr. Twenge and others say it owes to the rise in materialism and narcissism in what she has termed “Generation Me.”

Teens who have grown up in today’s social media environment know no other reality than the one in which anyone in their ‘network’ has a lens into their life and the chance to judge every act of it. 80 percent of teens active online participate in social networking sites, according to a Pew Research Center study from 2011. For this reason, they get the message that “extrinsic” values like how people perceive—virtually or in reality—is of greater importance than “intrinsic” values like their personal goals and the development of a unique self.

Dr. Twenge has elaborated on this in her blog at Psychology Today, saying that culturally, we have lost rites of passage that demarcate adulthood, emphasize individual fame for fame’s sake as opposed to real accomplishment, over-indulge our children from early developmental stages, and support and even laud self-promotion at the expense of others.

Additionally, Dr. Twenge and colleagues have indicated in their research that this generation of teens and young adults are less civic-minded, care less about social and political issues, are less interested in working towards solutions to environmental concerns, and have less empathy or interest in social justice.

Dr. Twenge’s theory is backed up by parallel psychological research, which has suggested that feeling one’s fate is shaped by external forces rather than one’s own efforts—what is known as ‘locus of control’—is more likely to cause depression and anxiety than feeling an internal drive and control over one’s future.

“Externality,” a measure of one’s perception of the influence of external forces over one’s life versus the influence of internal motivation and action, can be used to determine to what extent someone takes responsibility for their own actions and how accurately one identifies how their own behavior leads to certain outcomes.

High externality also indicates little conviction in one’s ability to behave in a specific way, something known as self-efficacy.

This could mean that those who focus on more materialistic and superficial lavishing of attention are in part doing so because they lack the self-esteem and efficacy to think that they can achieve something more significant and tangible.

This is in line with Dr. Twenge’s hypotheses. She argues that narcissism and the rising but inaccurate levels of self-evaluation can ultimately lead to deeper disappointment in one’s self and depression from alienation caused by increased self-involvement.

There has been a marked increase since 1960 in the number of people who feel this way—that external elements control their lives and future, according to a 2004 epidemiological study that Dr. Twenge and her colleagues conducted.

These feelings are associated not only with depression but also ineffective stress management, feelings of helplessness, and decreased self-control. They are also associated with higher levels of cynicism and self-serving bias.

Two studies of Dr. Twenge’s are illustrative of the fact that this rise in teen depression is indeed both significant and new.

One is a recent meta-analysis she and other researchers conducted, which explored self-reported feelings of depression and sadness in college and high school students from the 1930s to the present.

Even though self-reporting is often questioned, studies have shown that self-reported feelings of depression and compromised mental health tend to be accurate in children and adolescents—perhaps even more so than in adults— and even complement diagnostic criterion for mental illness.

Five times as many teens and young adults now score above cutoffs meeting psychopathology criteria as they did in the earlier through mid 20th century, according to Dr. Twenge’s analysis.

Population level results indicate the underlying shift has societal causes and is not merely the result of genetic predisposition to mental illness or an individual’s circumstances.

The second study took a closer look at teen depression in the past twenty years. Dr. Twenge noted that while major depressive disorder and suicide appear to have slightly receded since the early 1990s—likely a result of an increase in anti-depressant medications—current prevalence remains higher today than before the 1990s and psychosomatic complaints have continued to increase, such as feelings of being overwhelmed and anxious.

Other research has found a relationship between external motivators and neurological patterns.

One study revealed that teens suffering from depression had diminished responses to rewarding stimuli, such as genuine assurance of a job well done, a friendly affirmation from a friend, or small monetary compensations for the actual completion of tasks. Follow-up research showed that 20 year-olds who experienced depression as teens still have muted reward responses, indicating that help needs to be offered as early as possible.

Teen depression of course can have significant consequences, such as the increased likelihood of substance use and abuse, social withdrawal, strained relationships with family and friends, and in the worst cases, suicide.

To be sure, Twenge’s findings are controversial, and some continue to insist that there is no increase in depression or psychopathology in teens. But, in the opinion of Dr. Twenge, to prevent further increases in these depression statistics, teens need to move from constant self-promotion to feeling gratification from real achievement, and to reward feelings deriving from accomplishment as opposed to blindly seeking praise and compliment.

In today’s ubiquitous social media environment, that may be difficult to do, and the results slow to come.

Originally Published at The 2×2 Project November 7, 2012

The Top Five Myths About the Affordable Care Act

Originally published at The 2×2 Project, October 2012

It’s almost impossible not to be confused by the Affordable Care Act, even though it’s one of the most significant laws to be passed in the last fifty years.

If the content slicing and dicing wasn’t enough, there were the disingenuous characterizations of the law from its opponents, and the flagrant mistakes that some of our leading news organizations made in reporting the Supreme Court’s decision to uphold the law in June. A few misunderstandings that are particularly egregious keep arising in public health discussions about the ACA.

Let’s clear them up, shall we?

Myth #1: The ACA is a Sign of Impending Socialism

It’s true that the ACA is the biggest social welfare legislation since Medicare. It’s also true that socialized medicine has existed here for decades, with little opposition and even much support.

The crux of the socialist argument seems to hover around the issue of government control over an industry that would supposedly better function under a free market framework and limited restrictions. But it should be obvious that this is the framework we’ve operated under for decades, and that is has left millions without care. And true socialized medicine presumes that Americans are contributing to a government-administered healthcare delivery system. But that’s just not the case with the ACA.

Myth #2: The Government is Taxing You for Healthcare

Taxes have long been the poster child for government control. But the way this supposed “taxing” functions in the context of the ACA is tricky. Normally taxes are levied against all citizens, gleaned from earnings or tagged on to spending—like an income tax or sales tax you learned about in Econ 101.

While some justices used Congress’s taxing authority to render the law constitutional, the penalty fee—the “tax” in question—only applies to those who choose not to buy insurance, so outside of legal circles, calling it a “tax” seems a bit disingenuous to the true character if the penalty.

What’s more, whereas taxes are intended to pay for public goods that the government provides to everyone, the penalty under the individual mandate is intended to charge those individuals who don’t choose to buy insurance for the cost that society incurs as a result of their decisions—emergency room fees should they get hurt, for example.

Myth #3: It’s Going to Plunge Us Into More Debt and Cost Us Trillions

The claim that the entire bill will increase the deficit isn’t quite accurate. In fact, the Congressional Budget Office projects the ACA will save us money and cut the deficit by about a trillion dollars during its second decade of implementation.

In fact, as explained above, the ACA prevents average Americans from paying the healthcare costs of others: As is, those of us with insurance pay for care for the uninsured when they show up to the ER at our local hospitals requiring care—premiums go up, procedures are more costly, and physicians have to charge more. The ACA helps end that by requiring people buy insurance—or pay that penalty.

Myth #4: The Government is Eliminating My Choices

Opponents argue that under the ACA, the government will decide who lives and dies, and where Americans need to buy insurance. In fact, choice is built into the ACA with health insurance exchanges. These allow people to choose the providers and plans they want, something it turns out most people support and many states have begun to implement. By giving you the ability to select your physician, the ACA reallocates to you the power previously held by insurance companies to tell you which doctors you could see.

Additionally, with the expansion—and elimination in some cases— of spending limits, you’re no longer forced to choose what essential medical tests or care to pursue based on arbitrarily low spending limits imposed by insurers. Previously, these annual limits were in the tens of thousands. Now, the annual limit can be no less than $2 million, and lifetime limits are illegal for nearly all plans. This means you’re far less likely to run out of coverage if you develop a costly illness. It also means you don’t have to limit options if you and your physician choose additional forms of care or treatment that may improve your condition.

Myth #5: Obama is Raiding Medicare

In the last decade, payments from Medicare to private plans have increased dramatically—in fact, figures show that Medicare actually overpaid by 14-20 percent, and the costs of this overpayment fell on our seniors via increased premiums. Worse, there’s no evidence that these higher payouts to insurance companies improved care, probably because insurance companies—not seniors or providers—controlled allocation of that money.

The ACA has made Medicare more efficient by cutting some of that overpayment. This saves Medicare millions, but more importantly, improves care for beneficiaries in ways that a raid would not: Cuts will help close the prescription drug gap, reducing seniors’ costs. It also gives them preventive care free of any co-pays. Because of these changes, increases in payments to hospitals and providers is predicted to slow, hopefully slowing the growth of premiums and copayments that seniors have to pay. Most importantly, saving Medicare money ensures its longevity long into the future.

Returning to the Blogosphere

Hello readers! It’s been a while – three and a half years, it seems. In that span of time, I’ve moved on from my role at Stanford, worked for a couple years in HIV research management and capacity building at UCSF and in Kampala, Uganda, and then as an implementation director for a 13-country HIV surveillance project funded by the CDC. After a few years splitting time between SF, NYC, and East and Southern Africa, I’m back at UCSF at the AIDS Research Institute, where I’m directing strategic communications and partnerships for the HIV enterprise at UCSF and our affiliated institutions.

It’s been a good run – but I’m also working on documenting articles I’ve written across media sources in the last few years. Some I’e shared the beginnings of, and others I’ve yet to really promote. So in order to keep everything somewhat centralized, I’ll be publishing those pieces freshly on the blog over the next couple weeks. In order to prevent you all from being inundated by email updates, I’ll initially publish them privately and then make them public – so be sure to check back in the next few weeks. And more original content will be coming again soon. I hope you’ll all keep enjoying the reads, and as always, I welcome your feedback.

How the Female Condom Can Help the Women of Chile

Huge strides have been made in the understanding of how behavior drives HIV-infection. Notably, much of the coverage of how social constructs (and contexts!) contribute to the epidemic revolves around prevention education in the scope of proper – male – condom use. No doubt, comprehensive interventions in this arena have been instrumental in curbing infections. But it’s worth noting the limitations of this approach given the changing face of the virus.

Chile, a country with a prevalence of 28,963 notified people living with HIV (and an estimation of about twice that actually living with the virus), like many countries, is seeing an increasingly feminized epidemic.

Unfortunately (and perhaps unsurprisingly), most prevention and education frameworks neglect to take into consideration why this is.

In many cases, and specifically in Chile’s, women are contracting the virus via their husbands in relationships presumed to be safe and monogamous, and in which the negotiation of condom use on the part of the woman immediately presumes she is adulterous.

More nuanced approaches to prevention need to be undertaken with the understanding of how relationship dynamics – and the social climate in terms of perceptions of HIV+ individuals – contribute to the spread of the virus.

The International Community of Women Living with HIV/AIDS Chile is doing just that.

ICW Chile primarily works with women who contracted HIV from their husbands, have been subsequently widowed due to the illness, and are now attempting to forge their own way. This is difficult in a place where the stigma of HIV weighs heavily enough for most women to expect job termination if they disclose their status. While treatment is readily accessible – the Ministry of Health provides ARTs for all those in need, an initiative not to be understated – the social ramifications prompt many women to remain silent.

An organization dedicated to education, awareness raising, commemorations, and training in areas of women’s sexual and reproductive health and empowerment (and, importantly, with a board made up entirely of HIV+ women), they are embarking on an undertaking addressing the need for women to be able to protect themselves – by providing them with female condoms.

Female condoms aren’t entirely absent in Chile – but they can hardly be considered accessible when only one organization in Santiago is selling them – at $6 a piece. Of importance to note, they are desired – one organization that represents 2,000 sex workers in Santiago has shared that of the approximately 70 women a week coming to them for contraceptives and protection, female condoms are consistently requested.

The reason? They are often able to negotiate male condoms with clients, but not with their partners or husbands, putting both parties at risk. Female condoms can be inserted before sex by the woman herself, which precludes a negotiation conversation that comes with the use of the male condom (and is often ultimately refused).

This is where ICW Chile comes in.

Female Condom

The ICW Chile has already forged some of the essential partnerships to get this initiative off the ground. Groups like Fundacion Margen (a sex workers’ rights and advocacy group), in addition to their own five sub-regional teams around the country are prepared to help with raising awareness for the campaign as well as actually distributing the female condoms. Two HIV/AIDS organizations and two transgender health groups are also supporting ICW Chile’s efforts, and the Santiago Chapter of the National Women’s Service (SERNAM) has also offered their assistance. Creating a robust community of like-minded organizations, with resources and ties to mobilize is no doubt important here – but without the product, these connections run the risk of withering.

Luckily, one gift that’s helping them get off the ground is from the Female Health Company, one of the two primary female condom manufacturers, which recently pledged to donate 1,000 female condoms to the campaign, an instrumental and desperately needed move.

But it’s not enough.

When you reflect on the numbers above, it’s clear that ICW Chile needs our help in procuring the goods – and we’re going to make it as easy as possible to assist!

The goal is to distribute 30,000-35,000 female condoms in the next six months, and reach out to 60,000 people educationally. Showing a dedicated interest to the Chilean government, by region, and indicating how many people would utilize the female condoms if they were accessible (financially as well as physically!), could help prompt a firmer commitment from the Ministry of Health to provide female condoms on the scale of male condoms.

They’ve set up an Indiegogo page that details what your gift can provide, what you’ll get in return, and some of the important facts we’ve highlighted here. (I’m donating in the name of my mom for Mother’s Day!) They’ve gotten some buzz already, and this is a bandwagon worth jumping on.

I urge you to check out their Twitter and Facebook pages as well, and share widely with your networks. We’ve all seen what social media networks and crowd-funded projects can achieve, and I can think of no better project right now needing our crucial support.