John is a 43-year-old gay-identified man who arrives coughing at my office for his weekly therapy appointment. “I’ve now been living with HIV for 15 years and undetectable for as long as they could measure viral loads. Now my doctor is telling me I have to quit smoking my pack a day.”
I clarify, “So, you’ve been taking medications every day to enhance the quantity and quality of your life, yet you’re still smoking a pack of cigarettes a day. How does this make sense?”
“Everyone has to die from something,” he replied.
On the surface, what John is describing might seem a complete contradiction. How could someone who is so attentive to his body’s very survival and well-being be so actively destructive at the same time? Yet, this is exactly the predicament that many living with HIV are now facing, as they are two-thirds more likely to smoke than their HIV-negative counterparts. They may be adherent and steadfast in using medications to stay healthy, but equally dedicated to smoking tobacco cigarettes on a daily basis. It is the oral equivalent of writing with one hand and erasing with the other, which usually results in feelings of shame, embarrassment and guilt.
There are many reasons why someone might continue to smoke, despite the well-established risks. It’s why, in 2010, the Centers for Disease Control and Prevention found that the overall prevalence of recent smoking cessation was only 6.2 percent. One has to do with the fact that nicotine itself is a powerfully addictive drug. The National Institute on Drug Abuse has described the attraction:
Cigarette smoking produces a rapid distribution of nicotine to the brain, with drug levels peaking within 10 seconds of inhalation. However, the acute effects of nicotine dissipate quickly, as do the associated feelings of reward, which causes the smoker to continue dosing to maintain the drug’s pleasurable effects and prevent withdrawal.
Months after quitting, there are often palpable withdrawal symptoms of irritability, anxiety, sleep deprivation and reduced attention span.
However, to truly understand smoking means understanding depression. Nicotine raises the levels of dopamine in the brain, which typically results in experiences of pleasure, euphoria and calm. Smokers often report starting cigarette use during times in their lives when they were experiencing regular crises, trauma, panic, shame or alienation. People living with HIV are often exposed to stigma and rejection, and sometimes to violence or legal threats. Their incidence of depression is estimated to be as high as 60 percent. It is, therefore, not at all unusual or irrational for someone with HIV to utilize an accessible and legal drug such as nicotine to seek relief from extreme adversities, painful feelings and dangerous circumstances.
The problem comes when these coping mechanisms continue after a period of acute strain and stress has passed. An individual may then form a physical dependence on and affective addiction to nicotine. The former is often addressed by the medical community through prescribing patches, gums or pills to support quitting. The latter is rarely discussed or considered by health-care workers, as it is based on emotions and feelings that can be perceived as medically irrational.
In John’s case, smoking began in his 20s when he was coming out as gay in a Midwestern town, shunned by his family and facing an unknown professional future. After he started frequenting the nearest city’s gay bars, he discovered community, belonging, steady employment, as well as the satisfying experience of fitting in while smoking cigarettes with others. Then, his best friend became sick with AIDS-related complications, and they would regularly smoke together while John was taking care of him on his deathbed. After John was diagnosed with HIV, he found that some of the “buddies” he considered his chosen family reacted by not returning his voicemails and keeping a polite distance. Again, John coped with losing part of his community by maintaining his relationship with the one, steady “friend” in his life: his pack of cigarettes.
John moved to New York City, found gainful employment and built a new community of educated and supportive friends. Nevertheless, he still combats his earlier traumas: being shunned for being gay or HIV positive and losing friends to AIDS so early in life. For him, cigarettes have been the only consistency through it all. For him, giving up smoking is more than just a health decision; he says, “it’s one more thing I’m not ready to lose.”
Fortunately, as HIV regimens have improved in the last decade, so have options for people who want to quit smoking cigarettes but aren’t ready to give up the experience of nicotine. E-cigarettes became readily available in the United States in 2007 and have been estimated to cause 95 percent less harm than cigarette smoking. They are able to deliver nicotine into the body without the carcinogens that are so prevalent and dangerous in tobacco cigarettes. Because of this significant potential to improve health on the larger community level, the U.K. medicines regulator has approved the marketing of an e-cigarette brand as a nonsmoking aid, meaning it could end up being prescribed—and thus subsidized—by the country’s National Health Service.
When John and I discussed these developments in England, he was curious why his own HIV doctor, who was so insistent that he stop smoking cigarettes, never told him about this option. He hasn’t asked yet, but we speculated that it was consistent with U.S. providers generally favoring abstinence-based models for drug use versus harm-reduction approaches that offer options for consuming drugs in safer ways.
Whether e-cigarettes will satisfy John’s emotional connection to nicotine has yet to be seen and will certainly be addressed in ongoing therapy. But what we do know is that people living with HIV need not be exposed to unnecessary shame or stigma or to have vital information about their health and well-being withheld. Let’s all consider ways to start this new year grounded in empirical data, informed medicine and empowered decisions.
Image by Jarun Ontakrai