Table of Contents
Of the many challenges faced by people living with HIV, one of the most difficult is keeping up with important information about the medical management of the virus. New information about the science and treatment of HIV infection becomes available almost daily. Staying current with it can feel overwhelming.
At The Center for AIDS, a non-profit organization that tries to prevent HIV infection from becoming HIV disease, it's our job to keep on top of new developments. In fact, that's most of what we do. We don't provide social services, counseling, or financial assistance. Instead, we pour over medical journals, Internet sites, and other sources looking for information that can keep people with HIV alive and healthy.
In early 2000, we produced the first edition of this pamphlet after asking ourselves a simple question: "If we knew only 25 things about the treatment of HIV infection, what would be the most important things for us to know?" In 2011, when we decided to update the pamphlet, we put a twist on the question:
"In the opinion of leading experts in the field, what would be the 25 most important things for us to know?" Consequently, not only is all the information presented here based on national guidelines, it was also reviewed by our panel of 27 experts. (You can find their names here: www.centerforaids.org/publications/top25onweb.pdf) The information includes six recommendations -- numbers 1, 2, 6, 9, 12, and 15 -- that are known to save the lives of people with HIV. The other items on the list include information that is likely to increase survival time, prevent disability, or improve quality of life.
We've tried hard to make the information in this pamphlet short and easy to understand. If you have questions about anything you read here, or if you're interested in learning about something we haven't covered here, please let us know. You can call The Center for AIDS at 713.527.8219, or you can visit our website at www.centerforaids.org. We also have a walk-in treatment information center at 1407 Hawthorne in Houston. Stop by and see us.
Finally, I want to thank the expert consultants who gave of their time to ensure that the information in this pamphlet is accurate, timely, and vital. I also want to thank our editor Mark Mascolini, who compiled and edited the information and whose work in the field of HIV reporting is unmatched.
Until there's a cure,
Paul Simmons, BSN, RN, ACRN
The Center for AIDS Information & Advocacy
People with HIV should be active partners in their own care. Being an active partner requires an up-to-date understanding of HIV care. To help HIV-positive people understand their infection better, The Center for AIDS Information & Advocacy prepared this list of 25 things people with HIV should do promote their own health.
These suggestions for how HIV-positive people can take an active part in their health care rest mainly on three sets of US guidelines for HIV providers and people with HIV.1-3 After compiling a list of action points, we invited top HIV physician-researchers to pick the top 25 by ranking each point for importance on a scale of 1 to 5, with 1 indicating least importance and 5 indicating greatest importance. The 27 respondents, listed below, also suggested how these pointers could be implemented or fine-tuned, and they suggested additional pointers, also listed below.
Many experts who responded said all these action points are important for people with HIV. To give some sense of relative importance, we averaged the 1-to-5 scores for each point and ranked them from the highest average score to the lowest. For each point we list the average score, the percentage of experts who gave that point the highest score (5), and the percentage who gave that point a 4 or 5 score.
The Center for AIDS provides a related fact sheet for people with HIV stressing additional pointers and precautions involving sex, eyes, teeth, bones, food, drink, pets, work, recreation, and travel. www.centerforaids.org/publications/top25onweb.pdf
Just as you would go to a cancer specialist if you have cancer, you should go to an HIV specialist if you have HIV infection. Both are complicated diseases best cared for by someone with training in the field and with ongoing experience caring for many people with the disease.
Several studies show that HIV-positive people who see an HIV specialist do better than those who see other providers.1-3 US HIV treatment experts recommend seeking care from an HIV specialist.4 If you don't already have an HIV provider, you can find candidates through counselors at the facility where you tested positive for HIV, through community groups that help people with HIV and AIDS, or through your primary care provider.
Don't delay starting care after your HIV diagnosis. Even if you don't feel sick, your HIV infection gets worse and more dangerous if you don't start care.
Tell current and former sex partners and needle-sharing partners that you have HIV and suggest that they get tested. Tell your provider who else knows about your HIV in your family or among friends. If you have not told anyone you have HIV, discuss this with your provider.
HIV treatment experts in the United States recommend that the following groups of HIV-positive people should start therapy with antiretrovirals (HIV medications): (1) anyone with a CD4 count under 500, (2) anyone with an AIDS disease, (3) anyone with HIV-associated kidney disease, (4) anyone with hepatitis B virus (HBV) infection that needs treatment, and (5) all pregnant women regardless of CD4 count, to avoid passing HIV to the fetus or newborn.1 Half of this expert panel believes everyone with HIV infection should start antiretroviral therapy, regardless of CD4 count.
US experts on HIV infection stress that the goal of any antiretroviral combination -- first, second, third, or later -- is make the viral load undetectable on a standard viral load test (generally, below 50 copies).1 That goal holds true even for people who have taken several antiretroviral combinations and have HIV resistant to many antiretrovirals.
A detectable viral load means your antiretrovirals are not controlling HIV completely. When this happens, the virus can become resistant to the antiretrovirals you're taking and to others in the same antiretroviral family. When your viral load becomes detectable, your CD4 may fall and you will have a higher chance of getting an AIDS disease.
For your sex partner's protection -- and for your own protection -- you should use a condom whenever you have sex. Condoms are the surest way to protect your partner from getting infected with your HIV and to protect yourself from picking up a second HIV infection and from getting a different sexually transmitted infection (STI). Getting an STI can make you sick, can complicate your HIV care, and can raise the risk that you will transmit HIV. (See point 7 below.)
US HIV treatment guideline writers say "consistent and effective use of antiretroviral [anti-HIV] therapy resulting in a sustained reduction in viral load, in conjunction with consistent condom usage, safer sexual and drug use practices, and detection and treatment of STIs are essential tools for prevention of sexual and blood-borne transmission of HIV."1
US Health Resources and Services Administration (HRSA) guidelines on HIV care include advice on using both male and female condoms.2
Smoking causes or contributes to cancer, lung disease, heart disease, bone disease, and other conditions that pose a greater risk as you live longer with HIV. Every year, about 400,000 people in the United States die from a smoking-related disease.1
Nicotine is addictive, but you can kick the habit. Even people who have smoked for decades manage to stop. The first step in stopping is admitting that every cigarette destroys your health a little more and impairs your quality of life. While smoking is killing you, it yellows your fingers and teeth, raises the risk of cavities and gum disease, wrinkles your skin, and makes your clothes and home stink.
Talk to your HIV provider about ways to quit. Some people can quit cold turkey. Others benefit from using nicotine patches, lozenges, inhalers, or other therapies.1
When you stop antiretroviral therapy, your viral load goes up and CD4 count goes down. Several large studies confirm that stopping HIV medications for a prolonged period, even in a carefully controlled trial with lots of medical supervision, raises the risk of AIDS, major non-AIDS diseases, and death.1-4 With some antiretrovirals, stopping and restarting treatment on your own can allow your HIV to become resistant to those antiretrovirals and to others in the same drug group.
Sometimes your HIV provider will want to interrupt antiretroviral therapy, for example, if you have severe side effects, if you get sick with certain other diseases, or if you need surgery and can't take pills for a while. But you should never interrupt treatment on your own. US antiretroviral guideline writers say antiretroviral interruptions are not recommended except in clinical trials.5
If you are sexually active, your provider will probably recommend regular tests for STIs, such as the ones listed above.1,2 Avoiding STIs is important because they may make you sick, require additional treatment, complicate your HIV care, and raise the risk of acquiring or transmitting additional STIs.
Sexually active people always run the risk of picking up new STIs, especially if they have sex without condoms. Knowing the symptoms of STIs will help you spot them early and get prompt care from your HIV provider.
Human papillomavirus (HPV) infection is the most common STI in the United States. It can cause cervical cancer, anal cancer, penile cancer, and other cancers.3 There is a vaccine to protect you from HPV infection (www.gardasil.com/). Other common STIs are syphilis, gonorrhea, Chlamydia, and Trichomonas. The Centers for Disease Control and Prevention has helpful fact sheets on many STIs, including bacterial vaginosis, chlamydia, gonorrhea, hepatitis, genital herpes, syphilis, and trichomoniasis.4
Having sex with a condom protects you from many STIs. US Health Resources and Services Administration guidelines on HIV care include advice on using both male and female condoms.5
Many drugs, as well as supplements and nutrients you can get without a prescription, can raise or lower levels of your antiretrovirals (HIV medications).1,2 High antiretroviral levels raise the risk of side effects; low antiretroviral levels may not control your HIV.
Tell your HIV provider about all other drugs, supplements, or nutrients you take. And tell your provider whenever you're considering stopping or starting a nonprescription supplement or nutrient.
HIV infection and the problems it causes often lead to depression. If you often feel sad or unmotivated, talk to your HIV provider about these feelings. Depression is not a sign of weakness or something that can be ignored in hopes that it will go away. Depression is an illness that can be treated with counseling, drugs, or both, and your provider can help you decide whether you may benefit from such treatment.1,2
Major depression may lead to poor pill-taking habits and impair your commitment to staying healthy in many other ways. You may feel depression as sadness, lack of interest or pleasure in activities, fatigue, decreased ability to concentrate, appetite changes, sleeplessness, hopelessness, feelings of worthlessness or guilt, or thoughts of death or suicide.1
The National Institute of Mental Health has several useful, easy-to-read publications on depression in English and en Español: www.nimh.nih.gov/health/publications/depression-listing.shtml.
Your HIV provider will ask you about physical changes and symptoms of illness, like those listed above, every time you have an appointment.1 If you have troubling problems like these between office visits, contact your HIV provider. Physical changes or medical problems that may seem minor to you can signal a serious condition or may indicate poor control of HIV. Such problems may be side effects of your HIV drugs that your provider can address.
One of the HIV physicians who responded to our survey wrote, "I usually tell my patients to let me know if they develop symptoms that are outside the range of their prior experience -- either more severe, longer lasting, or new symptoms entirely."
Pregnancy changes the way your HIV infection should be cared for and could change your HIV drug needs. For example, levels of some HIV medications fall during the later stages of pregnancy,1 and some antiretrovirals should not be taken at all if you are trying to become pregnant because they could harm the fetus. Having an undetectable viral load is especially important during pregnancy and delivery to minimize chances of transmitting HIV to your child.
Some antiretrovirals have interactions with oral contraceptives, so you may need an additional or alternative contraceptive method if you use oral contraceptives and you don't want to become pregnant.1
You should be an active participant in your HIV care. The first sign of accepting that responsibility is keeping all appointments with your HIV provider and all other healthcare appointments, including dental and eye checkups. Even if you're feeling well, you should continue keeping your appointments faithfully.1 The course of your HIV infection or your response to antiretroviral therapy can change. Failing to keep appointments raises the risk of sickness and -- in the long term -- death.2 If you can't keep an appointment, call your HIV provider's office to reschedule.
Many studies show that taking illegal drugs, including "party drugs" or "recreational drugs," and drinking too much alcohol raise the risk of transmitting HIV to another person or getting infected with another sexually transmitted disease.1 Taking drugs and drinking too much alcohol also raise the risk that you will forget to take your HIV medications.2 Recreational drugs can also interact dangerously with HIV medications.
People who inject drugs should get help to stop. Your HIV provider can direct you to programs that will address addiction to injected drugs, pills, or alcohol. The National Institute of Drug Abuse (http://drugpubs.drugabuse.gov/) and the National Institute of Alcohol Abuse and Alcoholism (www.niaaa.nih.gov/Publications/PamphletsBrochuresPosters/English/Pages/default.aspx) offer many easy-to-understand booklets on drug and alcohol use and abuse.
Hepatitis virus infection is common in people with HIV because hepatitis viruses and HIV are transmitted in the same ways. Infection with a hepatitis virus has a great impact on HIV treatment and overall care.1,2
Your HIV provider will probably test you for hepatitis viruses, including hepatitis A, B, and C (HAV, HBV, and HCV). If you don't already have HAV or HBV, they can often be prevented by vaccines.2 Even if you do not feel symptoms of hepatitis, these viruses are damaging your liver. Alcohol and recreational drugs can increase liver injury caused by hepatitis viruses.2
Treatment options for HBV and HCV have improved greatly in the past several years. Treating hepatitis viruses in people with HIV requires careful planning and close monitoring. Do not stop treatment for HBV or HCV on your own.
Pregnant women can pass a hepatitis virus to the fetus.2
Tell your current and former sex partners and needle-sharing partners if you have hepatitis virus infection and suggest that your partners get tested for hepatitis viruses.2
As with any medicine, it's important to take your HIV medications regularly, as your HIV provider instructs. Taking your antiretrovirals regularly is critical to the success of your treatment.1,2 Missing too many doses can make HIV resistant to your antiretrovirals. If your antiretrovirals are causing side effects, don't stop taking them or skip doses. Tell your provider about the side effects immediately.
Don't panic if you miss a dose or two. You and your provider can plan ahead for what to do if you miss a dose. If you don't have a plan and you realize you missed a dose, call your provider to discuss what to do.
If you often have trouble remembering to take your HIV medications, your provider can help you plan reminders that will improve your pill taking.
Everyone -- with and without HIV -- should adopt a lifestyle that promotes good heart health. That's especially true for HIV-positive people, who run a higher risk of heart disease than people in the general population.1,2 Heart disease accounts for about one third of serious non-AIDS conditions in people with HIV and at least 10% of deaths.3 In addition, certain HIV medications raise to the risk of heart disease.1,3 However, steady HIV control through antiretroviral therapy lowers the risk of heart disease.3,4
Factors that raise the risk of heart disease in people with and without HIV include male gender, age 45 and older in men at 55 and older in women, high blood pressure, cigarette smoking, and a family history of heart disease.5
A heart-healthy lifestyle includes a balanced diet, regular exercise, and quitting smoking (see point 5 above). Checking blood fats (cholesterol and triglycerides) regularly has become a standard and ongoing part of HIV care.5,6
Resistance testing is the only way to tell if certain HIV medications (antiretrovirals) can help control your HIV. Regardless of whether you have already taken antiretrovirals, your HIV may be resistant to certain HIV medications -- because you can be infected with alreadyresistant virus. That's why US antiretroviral experts recommend a resistance test when you enter care (whether or not you start treatment then), when you start antiretrovirals, and if your antiretroviral combination fails.1,2
Pap testing can detect cervical infection, cervical cancer, and cervical changes that may lead to cervical cancer, an AIDS cancer. Chances of curing cervical cancer are high if it is caught early.
HIV experts recommend cervical Pap testing twice in the first year of HIV care and, if results are normal, every year after that.1,2 Some HIV experts also recommend an anal Pap test for women and men to detect signs of anal cancer.1
Women can learn more about Pap testing at the Womenshealth Website link below.3
HIV experts recommend certain HIV medications for initial combinations based on careful studies of their strength and safety.1 Virtually everyone starting HIV medications for the first time can take one of the preferred, alternative, or acceptable combinations listed by these experts. Which combination you start will depend on the side effects of different regimens, your tolerance of certain side effects, and whether you are infected with HIV resistant to some antiretrovirals.
US authorities on antiretroviral therapy strongly recommend viral load testing before antiretroviral therapy begins and routinely during treatment.20 The panel notes that "viral load is the most important indicator of response to antiretroviral therapy ... [It] serves as a surrogate marker for treatment response and can be useful in predicting clinical progression."
Your HIV provider will review which vaccines you've had and which you need to protect you from diseases like human papillomavirus (HPV) infection (which can lead to genital warts, cervical cancer, anal cancer, and other cancers), influenza, pneumonia, tetanus, and varicella zoster virus (VZV) infection (which causes chickenpox and herpes zoster).1,2
For more information on HPV, the most common sexually transmitted infection, see the Centers for Disease Control's Genital HPV Infection Fact Sheet at www.cdc.gov/std/. For CDC information on varicella (chickenpox and shingles) see www.cdc.gov/ncidod/diseases/list_varicl.htm.
As noted in point 14 above, HIV-positive people not already exposed to hepatitis A or B should have vaccines for those infections.
People with HIV run a higher risk of bone mineral loss (osteopenia and osteoporosis) and broken bones than do people in the general population.1-3 HIV infection itself and certain HIV medications can raise the risk of bone mineral loss.
HIV-positive people can help keep their bones healthy through weight-bearing exercise, getting enough vitamin D and calcium in the diet, and getting enough sun exposure to help the body make vitamin D. Exactly how much sun exposure is enough to stimulate vitamin D production without raising the risk of skin cancer is not known. The National Institutes of Health Office of Dietary Supplements suggests "approximately 5-30 minutes of sun exposure between 10 AM and 3 PM at least twice a week to the face, arms, legs, or back without sunscreen usually lead to sufficient vitamin D synthesis and ... moderate use of commercial tanning beds that emit 2%-6% UVB [ultraviolet B] radiation is also effective."4
Your HIV provider may also recommend daily supplements of vitamin D and calcium. Regular bone mineral density screening is not recommended for people with HIV and no other risk factors for bone mineral loss.5,6 Such screening is recommended for HIV-positive people 50 and older, especially if they have one or more risk factors for low bone mineral density.5,6
Factors that raise the risk of osteoporosis and fractures in people with HIV include early menopause, infrequent menstruation before menopause, low testosterone in men, diabetes, lymphoma, emphysema, more than 3 alcoholic drinks per day, low dietary calcium, use of methadone or opiates, physical inactivity, smoking, chronic metabolic acidosis, chronic infection, chronic kidney disease, depression, vitamin D deficiency, and use of certain antiretrovirals, glitazones (diabetes drugs), glucocorticoids (for asthma and other conditions), and proton pump inhibitors (stomach acid reducers).6
Almost one third of HIV-positive people have abnormal kidney function; the risk is higher in blacks.1 Severely damaged kidneys may make dialysis necessary and raise the risk of death.
Experts in HIV-related kidney problems recommend that everyone be tested for existing kidney disease after they test positive for HIV and regularly thereafter, depending on their risk of kidney disease.1
Kidney disease risk factors include black race, a CD4 count under 200, a viral load above 4000 copies, diabetes, hypertension, and hepatitis C virus infection.1 Certain HIV medications can cause or contribute to poor kidney function.
Cancer is the second leading cause of death in the United States.1 Earlier detection of cancer can make it easier to manage.
HIV-positive people have a higher risk of certain cancers -- including non-AIDS cancers -- than people in the general population.2,3 Certain viruses that commonly afflict people with HIV -- including human papillomavirus (HPV) and hepatitis viruses -- can cause or raise the risk of cancer (see points 14, 18, and 21 above). Quitting smoking is critical to preventing several types of cancer (see point 5 above).
HIV care experts recommend measuring blood glucose (blood sugar) after fasting every 6 to 12 months -- and 3 to 6 months after starting new HIV medications -- to check for high glucose levels or diabetes.4,5
High blood glucose can be prevented or controlled by watching your weight, planning a healthy diet, and exercise. For specific information on preventing diabetes, see the link at the American Diabetes Association site below.6 Excessive hunger or thirst and increased urination can be signs of blood sugar problems.4
Todd T. Brown, M.D., Ph.D., Johns Hopkins University, Baltimore, Maryland
Andrew Carr, MBBS, M.D., University of New South Wales, Sydney, Australia
David A. Cooper, MBBS, M.D., D.Sc., University of New South Wales, Sydney, Australia
Judith S. Currier, M.D., M.Sc., University of California, Los Angeles
Eric S. Daar, M.D., David Geffen School of Medicine at UCLA, Los Angeles, California
Steven G. Deeks, M.D., University of California, San Francisco
Carl J. Fichtenbaum, M.D., University of Cincinnati, Cincinnati, Ohio
Charles W. Flexner, M.D., Johns Hopkins University, Baltimore, Maryland
Joel E. Gallant, M.D., M.P.H., Johns Hopkins University, Baltimore, Maryland
Marshall J. Glesby, M.D., Ph.D., Weill Cornell Medical College, New York, NY
Steven K. Grinspoon, M.D., Harvard Medical School, Boston, Massachusetts
Keith Henry, M.D., University of Minnesota, Minneapolis, Minnesota
Charles B. Hicks, M.D., Duke University Medical Center, Durham, North Carolina
Bernard Hirschel, M.D., Ph.D., Geneva University Hospital, Geneva, Switzerland
Peter W. Hunt, M.D., University of California, San Francisco
Donald P. Kotler, M.D., Columbia University College of Physicians and Surgeons, New York, NY
David M. Margolis, M.D., University of North Carolina, Chapel Hill, North Carolina
Stefan Mauss, M.D., Ph.D., Center for HIV and Hepatogastroenterology, Düsseldorf, Germany
Peter Reiss, M.D., Ph.D., Academic Medical Center, Amsterdam, Netherlands
Gregory K. Robbins, M.D., Massachusetts General Hospital, Boston, Massachusetts
Jürgen Rockstroh, M.D., Ph.D., University of Bonn, Bonn, Germany
Jonathan Schapiro, M.D., Sheba Medical Center, Tel Hashomer, Ramat Gan, Israel
David M. Smith, M.D., University of California, San Diego
Pablo Tebas, M.D., University of Pennsylvania, Philadelphia, Pennsylvania
Amalio Telenti, M.D., Ph.D., Centre Hospitalier Universitaire Vaudois, Lausanne, Switzerland
Annemarie Wensing, M.D., Ph.D., University Medical Center Utrecht, Utrecht, Netherlands
Andrew Zolopa, M.D., Stanford University, Stanford, California