Let’s say you just tested positive for HIV—now what?
We know that folks are healthier if their virus is treated and suppressed with medication, so it’s standard practice now to start treatment as soon as you test positive. However, not everyone is able to start treatment right away. Here are some questions you might consider before making the commitment to treatment.
What’s in it for me? Why should I take HIV medication?
Studies show that people with HIV who take antivirals, regardless of their CD4 count or viral load, have fewer medical complications than those who leave their HIV untreated. These complications include not only conditions we think of as “HIV-related,” such as various types of infections, but also other conditions such as heart attacks, strokes, and kidney and liver problems. In other words, having detectable amounts of this virus in your bloodstream is bad for you. In addition, successful treatment, with good suppression of the virus, makes it much less likely that you will transmit your HIV infection to a sexual partner or unborn child before or during childbirth.
Do I have a health care provider who is knowledgeable about HIV? Am I comfortable working with them on my health?
When you first test positive, you may not already have a primary health care provider, or you may have one that is not an HIV expert. It’s important to see an HIV expert for your care. In most U.S. cities there are a number of physicians, nurse practitioners, and physician assistants who do high-quality HIV treatment, and are nonjudgmental about HIV and other sensitive issues such as sexuality and recreational drug use, so you will probably have a choice. In rural areas it may be harder to find a suitable provider, so you may have fewer choices, and unfortunately you may have to travel some distance for health care.
Do I have health insurance that will pay the cost of medication and monitoring?
HIV treatment is expensive. It’s important to have insurance that will cover the treatment. Your costs may still be high, but there are many programs that can help cover some of the costs. (See the latest POSITIVELY AWARE HIV Drug Guide, or go to positivelyaware.com.) Since HIV treatment is a long-term commitment, it’s important that treatment not be interrupted by lack of insurance or inability to pay.
Is my life situation stable—are there issues in my life that would get in the way of taking medications every day?
Life complications such as an unstable living situation, difficult work situation, out-of-control substance use, or depression all can make it harder for a person to take medication every day. If your ship of life is sailing through rough seas, you may want to find some calmer waters before starting on HIV treatment.
I’ve heard there are so many drugs for HIV now, how do I decide what’s the right treatment for me?
You can research different treatments yourself, but it’s easy to get overwhelmed. That’s why it’s good to have a trusted health care provider to sort through all the choices and recommend a treatment, or a few treatment choices, that may be best for you.
Being healthy and HIV-positive is not only about having an undetectable viral load. All the standard advice about healthy living applies to people with HIV, but having the virus means there are a few extra considerations.
Whole books have been written about healthy diets. There’s no special diet recommendation for people with HIV. There are a lot of fads out there, and even the research-based recommendations change from year to year. In general, though, unprocessed, fresh, or raw foods tend to be healthier than heavily processed foods. Also, we’re learning that excess carbohydrates (sugars, starches, and alcohol) contribute to weight gain, so it’s a good idea to avoid carbohydrate binges. There is no one study that definitively shows that multivitamin supplements have any particular health benefit for people with or without HIV; they are probably a waste of money. (Editor’s note: Many advocates would argue otherwise. Author’s note: I’d like to see the evidence from controlled studies that multivitamins improve health.) The one supplement that may be beneficial is vitamin D, which is important for strong bones. Many Americans are low in vitamin D, and bone strength can be an issue for people with HIV, so a vitamin D supplement (at least 2,000 IU per day) is not a bad idea.
Some physical activity every day is important. There is no one right way to add exercise to your daily routine—there are many ways. Some people devote a special time each day for pure exercise, such as lifting weights at the gym, swimming at the Y, or taking a 2-mile run before breakfast. But you don’t have to be one of those people to still include exercise as part of your life. You can build it into your day by walking or bicycling instead of driving or taking the bus to work or to the store; using the stairs instead of the elevator; walking the dog; and so on. As the saying goes, “The best exercise is the one you do.”
Folks with HIV should have all the same vaccines as everyone else, with some extra stipulations. In particular, everyone with HIV should be immunized for hepatitis A and B. There are now vaccines for HPV (the virus that causes warts and some cancers). These are only approved for adolescents and people into their mid- to late 20s; however, some providers recommend the HPV vaccine to sexually active folks older than the approved age, and sometimes insurance will cover it. Pneumonia vaccines are recommended for everyone with HIV. One type is given at any age and a second type is approved for use after age 50. A vaccine for meningococcus (the bacterium that can cause a type of meningitis) is now recommended for all folks with HIV. Your health provider can and should make sure you are up-to-date with your immunizations.
Modern life is stressful. HIV can add additional stress. Especially the first weeks or months after getting an HIV diagnosis, you may need some help dealing with stress. There are many ways to do this. Exercise (see above) is a great way to burn off stress. It helps to have a confidant or advocate—a friend you can talk to about what you are experiencing, maybe accompany you to visits with your provider, and provide a hug when requested. Talking with a counselor or therapist can be helpful for some folks. Some cities have peer support groups for people with HIV. Spiritual practice is another way to reduce stress. If you find yourself struggling with stress and anxiety and you don’t know where to turn, ask your health care provider.
Some mind-altering substances are okay in moderation. These include alcohol as well as cannabis (marijuana), which is now legal in some parts of the U.S. The key is moderation. Other drugs are too dangerous to ever be okay. These include tobacco as well as “street drugs” such as meth, cocaine, and heroin. The negative effects of these drugs outweigh any short-term pleasure they may provide. Two that can be particularly harmful for people with HIV are tobacco and crystal meth. Tobacco is a major factor in many cancers (for example lung, throat, cervical, anal, and bladder) as well as heart and blood vessel disease, and people with HIV seem to be more susceptible to its harmful effects. Tobacco is extremely addictive but there are ways to quit, and it’s worth it. More than half of Americans who have ever smoked have now quit. If you can’t quit altogether, reducing the number of cigarettes you smoke each day is better than nothing. Crystal meth ruins lives, rots teeth, and damages brains, yet it can be very hard to stop once you get started. Better not to start in the first place, but if you have started and aren’t yet ready to quit, there are places that can still help (such as a support group or other harm reduction program).
Often there is a lot of discomfort discussing sexuality, but it’s an important part of being human. HIV can impact a person’s sexuality in many ways. It can make dating complicated (“When do I tell the other person I’m positive? Will they reject me?”), and there are concerns about transmitting the virus during sex. We are learning that people whose HIV is well suppressed are very unlikely to transmit their virus. [See Undetectable Equals Untransmittable, in this issue.] This is reassuring, but many people are not aware of this information, and so there is still much fear and potential rejection around negative-positive matchups.
HIV can also impact hormone levels. Men with HIV sometimes develop testosterone deficiency. Lack of testosterone in a man can cause low energy, lack of interest in sex, and depression; it can also speed up the loss of calcium from the bones. It is common for men with low testosterone to take testosterone replacement, given by shots or a daily application of testosterone-laced gel. This should be considered carefully because there are hints that testosterone replacement may increase a man’s risk of a heart attack, and if a man develops prostate cancer while taking testosterone, the cancer may progress faster.
Erectile dysfunction is another common problem for men, and has many causes. Smoking is probably the single biggest factor against erections in men middle-aged or older, followed by diabetes. Interestingly, testosterone is not required for erections; men with low testosterone, as well as transgender women who have a penis and are on female hormones, often have normal erections, while many men with erection problems have normal testosterone. Erectile dysfunction may be a barrier to safer sex, because condoms interfere with erectile function in some men. Medicines such as Viagra or Cialis can be very helpful in improving the quality and duration of a man’s erection, and for some men it’s the only way they can use a condom and still keep an erection. However, these medications have become very expensive and are typically not covered by insurance.
Folks who are sexually active outside of a mutually monogamous relationship run the risk of sexually transmitted infections (STIs) such as syphilis, hepatitis C, gonorrhea, and chlamydia, so it’s important to be screened regularly. In some cases of syphilis or hepatitis C, the infection may be worse and progress more rapidly if you are HIV-positive. STI screening is an area where good communication with your health care provider is essential. It’s also important to have a provider who is knowledgeable and nonjudgmental about the diagnosis and treatment of these conditions. So don’t be shy about letting your provider know about your sex life. Part of your provider’s job is to help ensure that you are able to have a satisfying sex life without causing yourself health complications.
Reproductive health is a particular concern for many HIV-positive women and men, both straight and gay. It is now possible, and reasonable, for HIV-positive people to reproduce and have uninfected babies, but this must be done with the guidance of a knowledgeable health care provider. It is helpful if the pregnancy is planned, so that the viral load of the parent(s) is undetectable from the start, and so that if one parent is negative, the act of conception does not put them at risk of getting HIV. The chance of the baby turning out to be HIV-positive is extremely low if the mom’s virus is well suppressed during the pregnancy.
Other medical conditions
Folks with HIV are still susceptible to all the common conditions adults may get, such as high blood pressure, diabetes, heart disease, and cancer. The risk of some of these conditions is higher in people with HIV, so it is important to have regular monitoring, as well as preventive advice, by a primary care provider who is savvy about the health concerns of people with HIV. In addition, the medications used to treat or prevent these conditions may interact with anti-HIV meds. This is another reason to have an HIV-wise health care provider and, if possible, an HIV-savvy pharmacist. Two areas in particular are worth mentioning.
Cardiovascular disease is more common, and sometimes occurs earlier, in people with HIV. Heart attacks and strokes can be prevented, or at least delayed, by working on lifestyle factors: exercise, careful diet, and not smoking. Studies have shown that quitting smoking is the single most impactful thing an HIV-positive smoker can do to prevent a heart attack. There are medicines that may be helpful for prevention as well.
Some cancers also occur earlier, or more commonly, in people with HIV. For women, breast cancer screening is the same whether the person has HIV or not, but cervical cancer screening recommendations are stricter for HIV-positive women, because the cancer can progress more rapidly. Screening for colon cancer starting at age 50 has been shown to benefit everyone. For other cancers, screening is not as well proven and is more controversial. This includes cancers of the lung, prostate, and anus. Studies of screening and prevention for anal cancer are currently ongoing, although many providers are already performing anal pap tests to screen for possible precancerous changes in the area. It’s best to talk to your provider for advice on cancer screening and prevention, but remember that the single most important thing a person can do to prevent cancer is to not smoke.
Testing positive for HIV and being aware of your status is the first step in taking charge of your health and protecting your partner. Knowing the right questions to ask, and exploring areas where there may be room for improvement, can give you the tools you need to live longer and stronger with HIV.
Peter Shalit, MD, PhD, AAHIVS, FACP, attended college at Cornell University in Ithaca, New York, then moved to Seattle where he obtained his PhD in Genetics from the University of Washington in 1981. He graduated from the University of Washington Medical School in 1985, but his involvement in HIV care started in the early 1980s while still in medical school. He practices general internal medicine and HIV care alongside two fabulous Physician Assistants in a private clinic in Seattle. Dr. Shalit is Clinical Professor of Medicine at the University of Washington School of Medicine and is involved in the training of health professionals and students in HIV care and the health care of sexual and gender minorities. He lives on Capitol Hill in Seattle with his husband and three cats.