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.

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.

How Public Health Works to Save Lives

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

Courtesy of APHA

The 2×2 Project

It’s been a long while since I’ve written again, and the reasons are similar to my absence back in April—while I wasn’t writing another dissertation, my fellowship has just begun!

The 2×2 Project aims to increase discussion, debate, and understanding around current public health and epidemiological trends. Based at the Mailman School of Public Health at Columbia, we have a great team of writers and fellows. Come check us out! My latest post on abstinence-only education is up, along with some commentaries on the recent New York city soda ban, social networks and health, mobile apps, and climate change. We update a lot during the week, so make sure to like us on Facebook, and follow us on Twitter! I’ll have some pieces about the Affordable Care Act up shortly.

Happy Monday!

What Are Your Chances of Getting a New Provider if You’re on Medicaid?

You may be surprised, depending on what state you’re in. A chart pulled from data from the National Ambulatory Medical Care Survey Electronic Medical Records Supplement (2011) and recently also published in Health Affairs, shows how states compare with the national rate of physicians and offices accepting new Medicaid patients.

States estimated to be statistically significantly different from the national average are displayed in bold.

States estimated not to be statistically significantly different are displayed in italics. (Chart courtesy of Health Affairs.)

STATE ESTIMATE (%)
All 69.4
NJ 40.4
CA 57.1
FL 59.1
CT 60.7
TN 61.4
NY 61.6
LA 62.1
IL 64.9
MD 65.9
CO 66.1
OK 67.3
GA 67.4
MO 67.6
PA 68
KS 68.2
AL 68.5
RI 68.9
HI 69.9
TX 69.9
IN 70.6
OH 72
ME 74
DC 75.2
NV 75.2
VA 76
WA 76.4
NC 76.4
DE 78.3
VT 78.4
AZ 78.5
KY 79.4
OR 79.5
MS 79.6
MA 80.6
WV 80.9
MI 81.1
NH 81.7
AK 82.1
UT 83.5
SC 84.1
ID 84.7
NM 86.3
NE 87.0
IA 87.6
MT 89.9
AR 90.7
WI 93.0
SD 94.1
ND 94.6
MN 96.3
WY 99.3

 

New Jersey is not the state you want to be in. Especially since Chris Christie has stated he will not roll out Medicaid expansions under the Affordable Care Act. While it’s true that some providers avoid Medicaid because the payout isn’t as great as it is for Medicare or private insurers, and while it is also true that community health centers often provide great care for those on Medicaid, many of those are struggling mightily with funding cuts that may not allow them to see nearly as many patients or follow-up as consistently as needed.

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?