Dr. Shannon Turvey, Infectious Disease Fellow, University of Alberta
Today, the popular press is abuzz and I am aghast. For weeks, the online arena has echoed with whispers that a well-known celebrity is HIV positive. Long before confirmation, gossip had already fingered one individual. Mob mentality prevailed, and naming and shaming was the order of the day. Allegations abounded that Charlie Sheen was hiding his diagnosis and that the diagnosis was a “shocking secret” and a “scandal”.
Because of the scrutiny and the damaging rumours, this human being felt obliged to come forward and reveal personal details about his health to the world. In so doing, he has shown poise and has addressed the fear, mistruths, and salacious media coverage which have been more reminiscent of the pre-antiretroviral era than of a world in which the end of AIDS is achievable. He has correctly and astutely observed that these sub-truths are “threatening the health of so many others”. As with so many other issues, the popular media has opted to spread fear and hate rather than enlightenment.
In addressing this issue proactively, he and his physician have highlighted the fact that HIV infection is a chronic illness rather than a terminal disease, that antiretroviral therapy is effective on both an individual and a public health scale, and that HIV infection as a blanket descriptor for degree of infectivity is inaccurate. He has also demonstrated by example that substance use and HIV disease control are not mutually exclusive. By describing the extortion he has been subjected to, he has also reminded us that HIV infection can still be highly stigmatizing in 2015.
These events shed light on a number of facets of living with HIV that retain their relevance. In particular, stigmatization and discrimination continue to impact the lives of many living with HIV. Fear and misinformation perpetuate marginalization of those who are HIV positive. Concern about negative societal perceptions and the possibility of ostracism can present significant barriers to HIV testing and can impede linkage to care. This has important ramifications for the health of individuals as well as having broader public health implications. Equality and access to health care are basic human rights and stigma is their enemy.
Disclosure of any sort is a challenging and intensely personal journey. The fact that many in our society continue to view HIV infection in a negative light increases the hesitancy to disclose and enhances the isolation that this can engender. Charlie Sheen’s HIV status was revealed to the world without his consent. The popular media treated it as something to be admitted to and ashamed of. This is not an issue of honesty or transparency. Rather, the issues are the importance of privacy and the need for a society in which HIV-positive people can choose to disclose their infection in a manner and at a time of their choosing. Furthermore, this only serves to illustrate the need to create a safe environment in which this disclosure can happen without fear of negative repercussions.
A world in which HIV-positive people can access testing and treatment without barriers, and in which they are treated no differently than those living without HIV, is something to strive for. This is a world in which the social and economic contributions of those affected by HIV can be fully realized and in which their dignity is not eroded by discrimination. We have come so far, but the events of this week show how far we have yet to come.