Patients who have just been diagnosed with HIV are anxious about the future. For their clinicians, picking the right medication might be the easiest part of an appointment. The hard part is talking about the challenges that lie ahead. Many patients are looking for practical advice that will help them navigate their new status.
Sometimes, patients' questions might blur the lines between medicine, society and the law. Common questions might be: How should I disclose to my partner? Am I obligated to tell future partners about my status? What if my boss finds out? These are tough, complex questions for clinicians to address. The answer to each is nuanced, and will vary depending on each patient's family life, work environment and even the state in which he or she lives.
Stigma and criminalization are both buzzwords in the HIV care provider community, but they are tough concepts to untangle during a single doctor's appointment. Public health experts agree that both stigma and criminalization undermine HIV treatment and prevention efforts.
Although not necessarily within the purview of "medicine," stigma and criminalization are topics that clinicians working with newly diagnosed patients should be prepared to discuss. Often clinicians can help point patients to appropriate community health resources, social networks or even legal aid providers.
The Effects of Stigma on HIV Care
Research shows that many patients are still afraid to seek care for fear of being "outed."
The stigma surrounding HIV was spurred by the panic of the 1980s epidemic. Today, it is a significant barrier to quality care. Research shows that many patients are still afraid to seek care for fear of being "outed," a phenomenon that undermines treatment and prevention efforts.
Worldwide, patients in countries with greater levels of institutionalized homophobia have reduced access to medical services, which may ultimately lead to even more new infections and poor health. Among gay men, "we know from the data that stigma has negative effects on access to services and use of services," said Sonya Arreola, Ph.D., M.P.H., senior research advisor at MSMGF (Global Forum on MSM & HIV).
Criminalization Reinforces Stigma
Criminalization of HIV is based on the idea that HIV-positive persons should be punished for exposing an HIV-negative partner to risk. By 2011, there were 67 laws in 33 states criminalizing certain actions by people with HIV, according to an analysis by the Centers for Disease Control and Prevention (CDC) and the Department of Justice.
As of October 2013, 43 states had criminalized certain actions by HIV-positive individuals, such as their failure to reveal their status to an HIV-negative partner. Yet research shows that criminal laws are not useful public health tools.
HIV criminalization laws are not only ineffective public health policy, they also can be counterproductive.
"In general, the criminal law is such a blunt instrument, and not well designed to respond to communicable diseases," said Trevor Hoppe, assistant professor, Department of Sociology, University at Albany-SUNY. "That's why we have the NIH [National Institutes of Health] and the CDC."
HIV criminalization laws are not only ineffective public health policy, they also can be counterproductive, according to Leo Beletsky, associate professor of law and health sciences, Northeastern University School of Law. Stigma is a major barrier to effective HIV treatment and control, and these laws reinforce that stigma in a very clear manner, Beletsky said.
Coping With Flawed Policies
According to Beletsky, very few HIV-positive patients are aware of HIV-exposure laws. Beletsky theorized that this lack of knowledge is due to the fact that criminalization is not often discussed in the doctor's office. During an appointment, "the focus should really be on providing health care, not on health care providers doing law enforcement," he added.
The threat of incarceration is real. From 2008 to 2013, at least 180 people were prosecuted for consensual sex, biting or spitting, according to the Center for HIV Law and Policy. Because HIV criminalization laws were not dreamed up by public health officials, they often have little basis in real public health threats, agreed Beletsky and Hoppe. For example, a Texan man is serving 35 years in jail for spitting at a police officer, an action that carries almost zero risk of transmitting the virus.
By and large, the federal government cannot dictate state-level criminalization policies. However, in 1990 Congress passed the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, which required states receiving Ryan White funding to certify that their criminal HIV laws were intended to prosecute HIV-positive people who knowingly exposed others.
And in 2010, the White House's National HIV/AIDS Strategy issued guidelines on this topic that encouraged states to re-examine their HIV-exposure laws.
According to Arreola, many health care providers have discussed the need for physician training programs to educate doctors on sensitive issues such as stigma and criminalization. Community health workers could be a good resource for patients seeking to learn more about HIV stigma and criminalization, said Hoppe.
Sony Salzman is a freelance journalist reporting on health care and medicine, who has won awards in both narrative writing and radio journalism. Follow Salzman on Twitter: @sonysalz.
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