About HIV and AIDS How to Get the Most Out of Your Visit to the Doctor By Jen Laskey Medically reviewed by Ed Zimney, MD Not all of these questions will apply to everyone. Check the ones you want to ask before you go to the doctor s office. HIV/AIDS Causes, Testing, and Diagnosis What are the differences among the various HIV and AIDS tests? Which test do you recommend for me and why? What is the difference between HIV and AIDS? If I know I ve been exposed to HIV should I get postexposure prophylaxis (PEP) treatment to prevent infection? What does that involve? Does a negative test for HIV always mean no infection, or is a repeat test advisable for very recent exposures? Do I have HIV? Do I have AIDS? What type of HIV or AIDS do I have? Do I need additional diagnostic tests and evaluations, such as baseline measurements, urinalysis, or kidney or liver function tests? Is there anything I need to do to prepare for the diagnostic tests? How severe is my HIV or AIDS, and what s my prognosis? How healthy is my immune system, and how will you monitor it? How long might I be able to maintain my health with HIV? What are T-cell (CD4) and viral load counts? What does PCR mean? How will you monitor my T-cell (CD4) and viral load counts, and how often? What caused my HIV or AIDS? Do HIV and AIDS put me at risk for other complications or diseases, such as opportunistic infections (infections that are usually harmless in healthy people but are damaging to those with an impaired immune system), pneumonia, tuberculosis, herpes, and cancer? How can I avoid these additional illnesses? How will I know if I m coming down with an opportunistic infection? What is HIV/AIDS-related cancer? What HIV/AIDS treatment options are available? What treatments do you recommend for me and why? Page 1 of 6
HIV/AIDS Causes, Testing, and Diagnosis (continued) What are the risks associated with these treatments? How will my quality of life be affected by these treatments? What do I need to do to prepare for these treatments? What are the side effects associated with HIV/AIDS treatment? What should I do if my side effects worsen, or if I experience new side effects? How will my condition be monitored, and how will I know if the treatment is working? What kind of follow-up tests, etc., should I expect after treatment, and how often will I need them? Are you experienced in treating patients with HIV and AIDS? What other kinds of specialists should be on my HIV/AIDS team? Should I consider a hematologist, an infectious-diseases specialist, a nutritionist, a nurse, a social worker, a pharmacist, or a psychiatrist or psychologist? Should I consider participating in clinical trials with other patients who have HIV and AIDS? Why or why not? What can I do to keep my immune system strong and to stay as healthy as possible? How can I avoid transmitting HIV to others? Additional Questions for Women to Ask Does HIV or AIDS affect women differently from men? Will HIV or AIDS put me at a higher risk for other conditions, such as vaginal yeast infections, pelvic inflammatory disease (PID), human papillomavirus (HPV), and cervical cancer? Does an HIV diagnosis mean I can t have children? Can a combination of antiretroviral therapy and interventions during pregnancy, labor, and delivery prevent HIV transmission from mother to baby? How is HIV or AIDS likely to affect my baby if I am (or become) pregnant? How does pregnancy affect an HIV or AIDS condition? Do I need a women s health HIV specialist, such as a gynecologist or obstetrician who specializes in treating patients with HIV or AIDS? How can I be sure I won t transmit HIV to my kids? Page 2 of 6
HIV/AIDS Medications Will I need to take medication as part of my treatment? Is medication necessary if I m feeling fine? How often and for how long will I need to take medication? What types of drugs will you prescribe, and how do they work? Where can I get more information about these drugs? Do I need drug-resistance testing? How will anti-hiv or antiretroviral drugs help me? What are reverse transcriptase (RT) inhibitors, and how do they work? What are protease inhibitors, and how do they work? What are fusion inhibitors, and how do they work? How will the medications make me feel, and how will I know if they re working? When can I expect an improvement in my symptoms? What kinds of challenges might I face when it comes to taking multiple HIV or AIDS medications? Can you offer any advice on how to adhere to my medication regimen? What are the risks if I don t take my medications as directed, or if I forget to take them? Have these medications been tested in people with HIV and AIDS? Are there any recent clinical studies on them? Are there any side effects I should be aware of? What should I do if I experience any side effects? Are there any that may require me to call a doctor? Are there any that may require me to stop taking the medication immediately? Are these drugs habit-forming? Can I take them on an empty stomach, or should they be taken with food? Could these medications interact negatively with other medications I m taking? Can other conditions interfere with or be affected by my medication? How often is my medication regimen likely to change? How will we know when it s time to change my medication regimen? Page 3 of 6
Complementary and Alternative Therapies Should I consider any complementary or alternative therapies? Does medical research support these complementary or alternative therapies? Could acupuncture benefit my condition? Would supplements like vitamin D and calcium be good for me? Can stress management, relaxation techniques, or meditation benefit me? Would massage therapy help ease my muscle pain? Can herbal remedies interfere with my HIV/AIDS medications? Emotional Health and Family Concerns What should I do if I think or if family and friends say I m in denial about my diagnosis? How do I know whether depression and stress are adversely affecting my health? Should I seek emotional support from a group or therapist? Are there support groups that are focused on HIV and AIDS patients? How can I find one? Can you recommend any reputable online resources for HIV and AIDS support? How can my family help me cope with HIV and AIDS? Are there support services that can help my family cope with my condition? How is HIV/AIDS likely to affect sexual intimacy? What precautions do I need to take? How can I address bad coping habits, like drinking too much, abusing drugs, practicing unsafe sex, or neglecting my treatments? How should I deal with the social stigma associated with HIV/AIDS? General Health and Lifestyle Concerns Will I need to make any lifestyle changes to better manage my HIV/ AIDS or my treatment? How will HIV/AIDS treatment affect my daily life? How can I keep my immune system strong? Do I need to make any changes in diet or exercise or how much I rest? Page 4 of 6
Do I need to pay special attention to my nutrition? Can drinking alcohol, smoking (or being exposed to secondhand smoke), or using drugs affect my condition? How should I explain my condition to my spouse or partner, family, and friends? What s the best way to talk to my children about my illness? What, if anything, should I say to my boss and co-workers? How is my condition likely to affect my relationships, and what can I do to improve my situation? How will HIV/AIDS affect my sexual health? What do I need to know about practicing safe sex? Are there special concerns for older adults with HIV/AIDS? Should I make any special accommodations for school, home, or my work? What should I do if I feel I m being discriminated against at work or school? Can you recommend any good books, magazines, organizations, or online resources that focus on HIV and AIDS? Financial Health Will my treatment be covered by my health insurance plan? About how much will my treatment cost? If I choose a complementary or alternative therapy, is it likely to be covered by my insurance? If not, what kind of out-of-pocket costs can I expect? What are my options if I don t have any health insurance? Are people with HIV or AIDS eligible for Medicaid or Medicare benefits? Am I eligible for the AIDS Drug Assistance Program (ADAP) that s federally funded through the 1990 Ryan White Comprehensive Resources Emergency Act? Are there additional federal or state programs or private organizations that might be of assistance? Regarding my prescriptions, are there generic versions of the medications that would be more affordable? If not, are there other, equally effective medications that are available as generics? Page 5 of 6
Do you have any samples or discount coupons for my prescriptions? Would participating in clinical trials lower my health care costs? Do you know of any resources where people with HIV/AIDS can get financial assistance? Page 6 of 6