1980s Redux? The Troubling Criminalization of HIV

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Originally posted at The 2×2 Project.

The Impact of AIDS Activism: An Interview with David France

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.

Maternal Health and the Status of Women

Both globally and domestically, maternal health and the standing of women are inextricably linked. If women do not have the means and access to give birth safely, with trained and educated midwives, physicians and nurses, with appropriate prenatal education and care, it is often indicative of the standing of women in their communities and countries overall. Women’s inequality is also linked to the soaring population growth in developing countries, which will pose a range of new challenges for the next few generations.

Some may point to the United States as an anomaly, citing women’s increasing economic and financial independence, education, and leadership roles in America, while in terms of maternal health rankings, we remain pathetically far down the line for our resources (49 other countries are safer places to give birth than the U.S. – despite us spending more money on healthcare than anywhere else). Of course, the recent and incessant attacks on allowing women to access credible, accurate, up-to-date and comprehensive sexual and reproductive health education and services makes this statistic not entirely…surprising, shall we say.

So, I found the incredibly detailed and visually impressive infographic by the National Post, pulled from spectacular data and research done by Save the Children to be particularly fascinating. What they did was combine information on the health, economic, and education status of women to create overall rankings of the best and worst countries for women, splitting the countries into categories of more developed, less developed, and least developed, and the countries were ranked in relation to the other countries in their category (the divisions were based on the 2008 United Nations Population Division’s World Population Prospects, which most recently no longer classified based on development standing). While these divisions and the rankings can certainly be contentious and may incite some disagreement (nothing unusual there, these kind of rankings usually are), I thought the results were interesting. Some highlights – Norway is first, Somalia is last. The United States was 19th, and Canada was 17th (Estonia fell in between us and the Great White North) in the most developed. Israel is first in the less developed category, and Bhutan is first in the least developed category. The full report with data from Save the Children is also available, if you want to learn more about the information combined to make this image. Take a look:

A Woman’s Place – Courtesy of the National Post

One thing that I thought was particularly great was that the researchers combined women’s health and children’s heath data to create rankings specific to being a mother, when that category is sometimes only assessed based on access to reproductive care.The specific rankings of maternal health highlights largely mimics the overall standing of women, as seen here – Norway is number one, again, and Niger falls into last place:

Mother’s Index, Courtesy of Save the Children

I think these images and graphs are particularly moving given one of the top health stories coming out of the New York Times today, which showed that a recent Johns Hopkins study indicated meeting the contraception needs of women in developing countries could reduce maternal mortality (and thereby increase the standing of women in many of the nations doing poorly in the above ranking) globally by a third. When looking at the countries in the infographic that have low rates of using modern contraception and the correlation between that and their ranking in terms of status of women, it’s not surprising what the JH researchers found. Many of the countries farther down in the rankings have rates below 50%, and for those countries filling the bottom 25 slots, none of them even reach a rate that is a third of the population in terms of contraceptive use – which of course in most cases has to do with availability, not choice. Wonderfully, the Gates Foundation yesterday announced that they would be donating $1 billion to increase the access to contraceptives in developing countries.

Also of note, and in relation to maternal and newborn health, is a new study recently published by Mailman researchers that showed PEPFAR funded programs in sub-Saharan Africa increased access to healthcare facilities for women (particularly important for this region, as 50% of maternal deaths occur there), thereby increasing the number of births occurring in these facilities – reducing the avoidable (and sometimes inevitable) complications from labor and delivery, decreasing the chance of infection and increasing treatment if contracted. This has clear implications for children as well (and why I think this study relates to the National Post infographic and the NY Times article), since newborns are also able to be assessed by trained healthcare workers and potentially life-threatening conditions averted – including HIV, if the newborns have HIV+ mothers and need early anti-retroviral treatment and a relationship with a healthcare worker and system. And it goes without saying that if a new mother is struggling with post-delivery healthcare issues, including abscesses and fistulas, or was dealing with a high-risk pre-labor condition like preeclampsia, the child will have an increasingly difficult early life, perhaps even a motherless one.

Conservatives Win the Healthcare Messaging War

For many left-leaning Americans, little is more important aside from the state of the economy right now than healthcare reform – and they’re inextricably linked. Coverage of healthcare reform is pretty high this week, with the expectation that the Supreme Court will hand down their decision regarding the constitutionality of the Affordable Care Act this Thursday. This hasn’t always been the case.

Interestingly, while this is being considered a flagship of the Obama Administration, in his first year as President, healthcare reform ranked third in terms of media coverage mentioning Obama:

Media Coverage of Stories Featuring Obama in First Year of Term – Courtesy of PEW Research Center

One would think that covering healthcare reform – and specifically, the details of the Affordable Care Act, and what the law really means – would be imperative after the passing of the ACA. Ensuring that the law was really understood by citizens would seem to be fairly essential, but what happened instead was a decline in media coverage of HCR after Obama’s first year as President – as shown by the Pew Research Center:

HCR Coverage Over Presidency – Courtesy of PEW Research Center

So what does that mean? If coverage goes down, and little has been done to ensure that people truly understand the law (for example, understand what the mandate really means, and what the implications are if it is struck down, which was recently elegantly laid out by the NY Times), the short messaging around the issue becomes even more important.

Cable news can be inflammatory, reactionary, harsh, exaggerated, and at times, unsurprisingly infuriating. They often preach to their respective choirs on the political spectrum, and because of this, I worry that they’ve become so comfortable with their audience that the arguments aren’t as sharp, or clear, as they could be. The brief messaging lacks context and nuance, and headlines or key phrases can substitute for deep understanding of one’s understanding of an issue (and taking today’s ruling on the Arizona immigration law, one can see how brief messaging can create some confusion – one headline read that SCOTUS struck down three components of the immigration law, and the next one I saw trumpeted that SCOTUS had upheld a key component of the immigration law – both were true, neither were particularly informative)

In the context of the fight for comprehensive health care, conservatives seem to have won this messaging game. The new study from the Pew Research Center shows that while liberal talk shows spent more time talking about healthcare reform –

Liberal Versus Conservative Talk Show HCR Coverage – Courtesy of PEW Research Center

– certain select terms used by healthcare reform opponents that really emphasized negativity were used at rates nearly twice that of terms used by supporters that underscored positive elements of healthcare reform:

Terms Used in HCR Debate – Courtesy of PEW Research Center

Take a look at these terms – which would you say were more compelling? Phrases that would incite more visceral, gut reactions from listeners? I can see how “insuring pre-existing conditions” would actually appeal to both sides, but this barely stood a chance against “more taxes with health care reform” which was mentioned nearly twice as many times and can certainly appeal to the financial fears of viewers. “More competition” would seem to appeal to many free-market espousing conservatives, but is trumped by “more government involvement,” which is the base fear of many Republicans. “Rationing health care” just isn’t true, but instead of rebutting that with facts about the law, HCR supporters shot back with “greedy insurance industry,” which likely wouldn’t win over any opponents to the law, who can claim that insurance agencies are just businesses, trying to capitalize on profits. And that’s where I think the HCR supporters had an in that they didn’t take – commenting on the prioritization of profits for a specific industry over the health of our communities and country as a whole.

Is the assumption that compassion is not an effective communication tool? If so, why is that? I find myself deeply moved by stories of people who are in desperate need of health care but lack the resources – insurance, financial, proximity to quality affordable care  – to get it. And I’m certain that I’m not the only one. New York Magazine today touched on the alarming fact that the moral argument – the empathetic position, the community cares idea, the position that healthcare is a fundamental human right – has been remarkably absent from the healthcare debate. I fear that it mostly plays into the uniquely American mentality that regardless of circumstance, each individual has to be able to fend for themselves. While this concept underscores certain types of resiliency and determination that are I think are overly-admired, the fact of the matter is that disregarding the circumstances is not possible. Disregarding the impact of staggering inequality of access to care and financial resources is short-sighted and, more importantly, I would say rather cruel.

If the discussions had focused more on why everyone deserves healthcare – why everyone deserves to be treated with dignity, receive comprehensive care, understand how to care for themselves – since healthcare is an essential component of our right to life (not to mention the pursuit of happiness), would the results have been different? If we appealed to our humanity and illustrated the absurdity of someone dying from a treatable illness, when people who could have helped them essentially stood by just because…they didn’t have any money? Because that’s essentially what this is – the inability to personally protect oneself and one’s family because of dearth of resources. If we had made it more personal, and less political? If we focused less on the greedy agencies, the so-called rationing of care, the increased business competition, if we had actually responded to the claim of too much government intrusion with the response that the government should in fact be intervening when doing so can save the lives of its citizens? Does the punishment of death really fit the ‘crime’ of not getting oneself health insurance, if one was not able to do so because they couldn’t afford it?

Is that the legacy we want to leave?