Living with HIV entails more than viral load and CD4 cell counts. It requires long-term planning that reflects all of your body’s needs.
Once you start coming to terms with your HIV diagnosis, you’ll likely breathe easier knowing that your future looks much brighter than you might have originally suspected. With support and quality care, the idea of living a long and healthy life with HIV is no longer a mere hope—it’s a reality for many people living with the virus.
It’s important to recognize, however, that the basic components of HIV care—state-of-the-art antiretroviral therapy and close monitoring of your viral load and CD4 cell counts—are just the beginning. “For years, health care providers have been so focused on the virus that they have forgotten about the host,” says Matt Sharp, director of treatment and prevention advocacy at Project Inform in San Francisco. “Now that people are living longer, I think many are being forced to reckon with a holistic approach to care, as conditions not related to HIV are hitting people.”
There’s no time like the present to begin discussing these conditions with your health care provider. HIV care is increasingly becoming a forward-thinking science. “Health care should be thought of in terms of pro-action instead of reaction,” Sharp says. “When we have a strategy for our health in place, we can prevent certain conditions, and if we do get sick we are better prepared to handle the situation.”
Graceful Aging With the likelihood of a long life with HIV comes the reality of age-related health problems, including cardiovascular disease, non-AIDS cancers (such as melanoma, lung and anal cancers), liver disease and bone loss. The reason for the increased prevalence of these problems among people living with HIV isn’t exactly clear, though research points to two possible factors: HIV treatment side effects and low-level inflammation caused by the virus itself.
“People with HIV and their health care providers should discuss these other diseases on a regular basis,” says Richard Ferri, PhD, ANP, an HIV-positive nurse practitioner and author from Cape Cod, Massachusetts.
Though the issue of staving off age-related health problems is complex and involves a number of moving parts, you should begin by asking your health care provider key questions: Should I start treatment early to slow the effects of inflammation? How will you monitor my overall health, not just my HIV health? Should I avoid any HIV treatments, based on my personal or family medical history or my short- or long-term goals?
“Unfortunately, health care providers are paid to treat, not prevent,” Sharps says. “Many of the long-term non-AIDS conditions people are experiencing can be prevented.”
Baby Talk “All women,” regardless of their HIV status, “have the right to choose to have a baby or not,” Ferri says. Becoming pregnant—there are both sexual and nonsexual conception options—and having a safe pregnancy and delivery are all possible for HIV-positive women (positive men can also father healthy, negative children), but they require careful planning with a health care provider.
HIV treatment plays a big role here. Whether you’re hoping to conceive naturally or would like to attempt nonsexual methods such as in vitro fertilization, it’s key that you get your viral load undetectable—and keep it there throughout pregnancy and delivery. While there’s no shortage of antiretrovirals that can help achieve this, some can be problematic during pregnancy and should be discussed with your health care provider if there’s a chance you might become pregnant. For example, efavirenz (found in Atripla and Sustiva) might cause birth defects if used while pregnant. Ferri adds, “protease inhibitors are generally best avoided during pregnancy since they may increase the mother’s blood sugar levels,” ultimately increasing the risk of gestational diabetes.
Mind Over Matter Fear, shame, depression and anxiety are common among people living with HIV, especially those who are newly diagnosed. They are also huge obstacles to getting the best care possible. “Motivation for a long and healthy life depends on good mental health, which includes the ability to accept life with HIV and act accordingly to stay well,” Sharp says.
Left unchecked, emotional and mental problems can lead to low self-esteem, difficulty functioning at home and work, and the abuse of alcohol or other drugs. They can also make things challenging in terms of HIV treatment. Some meds can cause central nervous system problems and exacerbate depression. Plus, studies have found that mental illness can lead to poor treatment adherence, increasing the risk of treatment failure and drug resistance.
Maintaining mental health is a key component of HIV care. “It is important to start thinking about your issues as soon as you’re diagnosed,” Ferri says. Support groups (find one through your local AIDS service organization), licensed mental health professionals (i.e., a psychotherapist or psychologist) and medications are three possible ways to manage depression.
Risk Reduction While you can’t change some factors that might increase your risk of certain health problems—like your age, sex, skin color or HIV status—you can modify a number of other factors. Though smoking, drinking and drug use may seem like logical ways to deal with the stress of a new diagnosis, there is no shortage of research indicating that they greatly contribute to higher rates of non-AIDS diseases, pregnancy complications and mental illness among people living with HIV.
Take smoking for example. “About 20 percent of the general population smokes,” Ferri says, “but over 50 percent of us living with HIV are addicted to nicotine.” Cigarette smoking has been linked, time and time again, to higher rates of cardiovascular disease, lung cancer, emphysema, anal and cervical cancer and a number of other health complications among people living with HIV at younger-than-usual ages.
“The best way to deal with the stress of being newly diagnosed is to deal with it, not ignore it,” says Ferri, who underscores the importance of communicating with health care providers about reducing potentially harmful habits. “Acknowledging [them] is the first step in getting a better handle on your life,” Ferri says. “It’s about progress, not perfection.