25 Things You Need to Do if You Have HIV

Table of Contents

• Introduction
• 25 Things You Need to Do if You Have HIV
  1. If you have HIV, start care as soon as possible with a health care provider or medical group that has HIV experience.
  2. With your HIV provider's help, decide when to start therapy with antiretrovirals (HIV medications).
  3. A primary goal of antiretroviral therapy is to make your viral load undetectable, regardless of how many combinations of antiretrovirals (HIV medications) you have taken.
  4. Avoid passing your HIV to others or picking up a second HIV infection or a different sexually transmitted infection from someone else.
  5. If you smoke, get help to stop. Smoking causes or contributes to several diseases that affect people with and without HIV.
  6. Stopping antiretrovirals (HIV medications) without your HIV provider's advice can be dangerous. If you think an antiretroviral is causing a side effect (such as nausea or diarrhea), tell your provider as soon as possible, but don't stop taking the drug on your own.
  7. Get tested for sexually transmitted infections (STIs), including syphilis, gonorrhea, human papillomavirus (HPV), Chlamydia, and Trichomonas, and learn the signs and symptoms of STIs. Sexually active people, especially those with multiple partners, may need regular STI testing.
  8. Tell your HIV provider about all other drugs, dietary or herbal supplements, and nutrients you take. Talk to your HIV provider before starting or stopping any drugs, supplements, or nutrients.
  9. Depression (feeling sad or unmotivated much of the time) can be a serious medical problem -- it is not a sign of weakness. Discuss depression with your HIV provider and decide whether you may benefit from drug therapy or counseling for depression.
  10. Tell your HIV provider about any disease symptoms or medical problems you have, including fever, night sweats, weight loss, headaches, vision changes, mouth sores, swallowing difficulties, breathing/lung symptoms, diarrhea, skin rashes or sores, and changes in mental function.
  11. Women of child-bearing years should discuss their pregnancy plans and desires with their HIV provider. Tell your provider immediately if you become pregnant.
  12. Keep all your HIV care appointments, as well as appointments with other health professionals your HIV provider may recommend.
  13. Use of illegal drugs or "party drugs," or excessive use of alcohol, can interfere with your HIV care and HIV pill taking and can raise the risk you will infect someone else with your HIV. You should address substance use or abuse with your HIV provider.
  14. Get tested for viruses that cause hepatitis. Ask your HIV provider whether you need a vaccine for hepatitis A or hepatitis B. Start treatment for hepatitis B or C if necessary.
  15. Take all your HIV medications regularly, exactly as instructed.
  16. Practice good heart health, including exercise, diet, quitting smoking, and getting your cholesterol and triglycerides measured regularly.
  17. When you start HIV care, get a resistance test regardless of whether you plan to start HIV medications immediately. Then get a resistance test when you start HIV medications or if your antiretroviral combination fails.
  18. Get a Pap test for cervical cancer (an AIDS cancer) as often as your health care provider recommends.
  19. When you start antiretrovirals (HIV medications), pick one of the combinations recommended in guidelines.
  20. Get a viral load test when you start care and regularly thereafter, regardless of when you start antiretroviral therapy (HIV medications).
  21. Talk to your HIV provider about whether you need certain vaccines, including human papillomavirus (HPV) vaccine, influenza vaccine, pneumococcal vaccine, tetanus vaccine, and varicella vaccine.
  22. Keep your bones strong through weight-bearing exercise, sun exposure, a diet containing enough vitamin D and calcium, and stopping smoking.
  23. Discuss risk factors and testing for kidney disease with your HIV provider.
  24. Talk to your HIV provider about appropriate testing for cancer. Some cancers -- including some non-AIDS cancers -- are more common in people with HIV than in the general population.
  25. Get your blood sugar tested after fasting at least once a year to see if you have pre-diabetes or diabetes.
• Other Tips From Our Expert Panel
• Survey Respondents

Introduction

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
Executive Director
The Center for AIDS Information & Advocacy
Houston

25 Things You Need to Do if You Have HIV

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

References

1. Panel on Antiretroviral Guidelines for Adults and Adolescents. Guidelines for the use of antiretroviral agents in HIV-1-infected adults and adolescents. Department of Health and Human Services. January 10, 2011. www.aidsinfo.nih.gov/ContentFiles/AdultandAdolescentGL.pdf. Accessed June 17, 2011.
2. US Department of Health and Human Services Health Resources and Services Administration. Guide for HIV/AIDS clinical care. January 2011. http://hab.hrsa.gov/deliverhivaidscare/clinicalguide11/pdf/p07-cg/CM_Jan2011.pdf. Accessed June 20, 2011.
3. Aberg JA, Kaplan JE, Libman H, et al; HIV Medicine Association of the Infectious Diseases Society of America. Primary care guidelines for the management of persons infected with human immunodeficiency virus: 2009 update by the HIV Medicine Association of the Infectious Diseases Society of America. Clin Infect Dis. 2009;49:651–681. http://cid.oxfordjournals.org/content/49/5/651.full. Accessed May 19, 2011.