Staying Informed is the Key to Staying Healthy with HIV

In a time when HIV-related information, research, and prevention strategies are more widespread than ever, rates of new infections remain stubbornly stable. The most important tool is knowledge, both about preventing HIV, and, for those infected, keeping as up-to-date as possible about new meds and methods of treatment.

Despite prevalent stereotypes about who is susceptible to HIV, experts recommend that everyone who is sexually active maintain an awareness of their status.

"We hear a lot about gay men and IV drug users, but if a woman comes through my door with five kids, and she's been married 30 years, I'll ask 'Why don't you go ahead and get tested?'" said Dr. Frank Spinelli, a member of the Board of Directors of New York City's Gay Men's Health Crisis. "Everyone should get tested. I'm adamant about this."

Although Dr. Michael Horberg, a Northern California physician and former president of the Gay and Lesbian Medical Association, recommends that everyone should get tested for HIV at least once. "If you're at risk because of certain behaviors, such as having multiple sexual partners or sharing needles," he added, "you'll need to be tested more regularly if those behaviors don't change."

"It's a disease that exists in the world, and it's not going away," Spinelli emphasized. "A significant portion of the population doesn't even know what their status is.

"There's no good reason not to get tested," added Spinelli, who recommends an HIV test at least every six months, depending on sexual activity: "If you're having more or more risky sex than average, I'd suggest getting tested more frequently."

Spinelli cautions that people who become infected with HIV often don't conform to commonly accepted parameters of behavior. "We need to remove the stigma that there is a certain kind of person who has HIV," he said.

Getting tested has a benefit besides finding out one's serostatus: It provides an opportunity for a candid discussion with a healthcare professional about one's sexual activity. Inevitably, the conversation will return to condoms and now, Truvada, which, when taken regularly, can significantly reduce the possibility of transmission.

"Instead of simply saying 'You're negative, good luck,' doctors can offer real, solid interventions to prevent transmission," noted Dr. Joel Gallant, chair of the HIV Medicine Association.

For those testing positive, discussing the results is the first step in developing a routine of regular healthcare check-ups, which are crucial in determining the management and prognosis of the illness.

"If you enter treatment early, we can prolong your life," said Spinelli. "For patients who have just been notified that they're HIV-positive, I tell them, 'You're going to get to know me really well.' We're going to see each other quite frequently, especially in the beginning.'"

Regular visits with an experienced healthcare provider make all the difference between living a normal life with HIV or succumbing to a host of HIV-related illnesses.

"There's a lot involved beyond knowing your status," Horberg said. "Your doctor will determine your viral load and the parameters of the disease, prescribe medication, identify side effects, and offer counseling about other STDs and safer sex and healthy behaviors." It's equally important to establish and maintain a close relationship with a primary physician, who will ensure that the patient receives every possible avenue of preventative health care, from immunizations to cancer screenings.

All HIV-patients should see their doctors several times a year after, according to Spinelli -- preferably not less than once every three months. "We can check up on your medications," he said. "It's not too laborious. The visits are shorter and more focused when you're on top of it and going regularly."

It only makes sense that those who make regular doctor visits after testing positive are nearly always more compliant in taking their meds. Regular visits also enable a doctor to tailor meds to changes in lifestyle. "It's important to understand the patient as a whole," Spinelli noted.

On the flipside, patients who don't see their doctor are much more likely to stop taking meds. If, for example, they are suffering from side effects, they will just assume that going off the meds is the answer, when, in fact, the doctor can evaluate what's happening and made the necessary changes. Not staying informed not only leads to HIV-related infections, but also the possibility of developing a drug-resistant strain of the virus.

"Going to the doctor sporadically doesn't lend itself to success in the long term," Spinelli conceded. But doing so can mean that, "you're just playing catch-up. This goes for any chronic disease," he added. "You wouldn't see your endocrinologist once a year if you were diabetic."

Most importantly, everyone infected with HIV needs to find a doctor whom they believe to be up to speed about latest developments in treatment and who keeps busy reading peer-reviewed journals and reliable websites. The image of the folksy doctor may be charming, but do you want to entrust your fate to someone for whom HIV is at best a sideline?

"This isn't something you want to leave to chance," said Horberg. "These days, more and more physicians are getting experience in HIV treatment, and that's great. But do some research, talk to other patients, ask questions, and make sure you're getting treated by someone with real expertise."

A patient should never be afraid of poking around and asking whether the doctor attends professional conferences. It's not even out of turn for patient to do his or her own research and see how much the physician knows -- or doesn't know.

"Interview your doctor before beginning treatment and figure out how you feel about them," Spinelli recommended. "Do you have a good rapport? What do they do to stay up to date? You need to be able to rely on them to give you the best possible information. Every week on Facebook I see a new article about an HIV 'cure' -- sensational news that's not really true. It's your doctor's job to give you the most unbiased, up-to-date information."

As Spinelli pointed out, new advances in HIV are constantly being discovered.

"People feel good knowing there are so many new developments in the pipeline," he said. "If one medication doesn't work out, you can try something else that will be better for your individual needs."

Separating credible and important developments from sensationalism takes work -- on the part of the doctor and the patient. In the early days of the epidemic, patients often told their doctors about new treatments. Today, there's no excuse for anyone not to be aware of the progress being made in making HIV more and more a manageable condition rather than the death sentence it once was.

This story is part of our special report: "Living Well with HIV". Want to read more? Here's the full list.