Managing Your HIV Medical Appointments
HIV is a manageable chronic condition. Part of staying healthy with HIV is seeing a health care provider regularly so that he or she can track your progress and make sure your treatment is working. That means managing your HIV medical appointments.
Some people with HIV go to an HIV clinic for their medical appointments; others go to a community health center, a Veterans Affairs clinic, or a private medical provider’s office. In addition to seeing your primary HIV provider, you may need to see specialists or access the special skills of nurses, pharmacists, nutritionists, social workers, case managers, patient navigators, and others. Preparing a plan can help make this easier.
Frequency of Appointments
Current HIV treatment guidelines recommend that most people with HIV see their health care provider for lab tests every 6 months. Some people may see their provider more frequently, especially during the first two years of treatment or if their HIV viral load is high or detectable. People who take their HIV medication every day and have a very low or undetectable viral load at every test for more than two years usually only need to have their lab tests checked twice a year.
Before Your Visit
These tips can help you better prepare for your visits and be more informed about your care:
- Start with a list or a notebook. Write down any questions you have before you go. (The Department of Veterans Affairs offers a useful list of sample questions.)
- Make a list of any symptoms or problems you are having. These may include difficulties taking your HIV medications, sleeping issues, feelings of sadness or anxiety, or issues with intimacy.
- Bring a list of your medications (or the medications themselves). This includes the names and dosages of all HIV medications, non-HIV medications, over-the-counter medications, vitamins, or supplements you are taking. Include a list of any HIV medications you may have taken in the past and any problems you had when taking them.
- Bring a copy of your medical records if your provider does not already have them, including visits to specialists. You have the right to access your medical records and having copies can help you keep track of your previous lab results, prescriptions, and other health information. It can also help a new provider have a better understanding of your health history.
- Be prepared to talk about any changes in your living situation. This includes changes in your relationships, insurance, employment, or housing that may affect your ability to take your medication as prescribed, keep up with your HIV appointments and treatment, or to take care of yourself. Your provider may be able to connect you with resources or services to assist you.
- Be on time. Do your best to plan ahead. If you are late, your provider may not be able to see you the same day.
During Your Visit
- Be prepared for lab tests. If your provider wants to run some lab tests during your visit, make sure you understand what they’re for and what your provider will do with the results. If you don't understand, ask your provider to explain it in everyday terms. Typically, you will be asked to give a sample (blood, urine) during your visit. Your provider’s office will call you with your results in a few days or may post them in an online patient portal. Keep track of your results and call your provider back if you have any questions.
- Be honest. Your provider needs to have the most accurate information to help you manage your care and treatment. Talk about any HIV medication doses you have missed. Tell your provider about your sexual or alcohol/drug use history. These behaviors can put you at risk of developing drug resistance and getting other sexually transmitted infections (STIs) as well as viral hepatitis. Your provider will work with you to develop strategies to stay as healthy as possible.
- Describe any side effects you may be having. Your provider will want to know how the HIV medications are affecting your body in order to work with you to solve any problems and find the right combination of medications for you.
- Ask your provider about your next visit. Ask when it should be scheduled, what to expect, and what you should bring to that appointment.
- Ask for a list of your upcoming appointments when you check out. Work with your case manager, if you have one, to develop a system to help you remember your appointments, such as signing up for phone, text, or email reminders.
Asking Questions and Solving Problems
It’s important for you to be an active participant in your own health care and it’s your right to ask questions. You may need to direct your questions to different people, depending on what you need or want to know.
HIV health care providers (doctors, nurse practitioners, physician assistants) can answer questions about a wide range of issues that affect your health. These include:
- How HIV is affecting your body
- Medication issues, including medication changes, new medications, side effects and how to manage them, and how your HIV medications may interact with other medications you take
- Sexual health issues, including questions about any sexual symptoms you may be having, how you can prevent or treat STIs, and how you can prevent transmitting HIV to your partner(s)
- Family planning considerations, including your goals; birth control options for you and/or your partner, if relevant; your options for having children should you wish to do so; and, if you are a woman with HIV who is pregnant or considering getting pregnant, how you can reduce HIV transmission to your baby
- Smoking, its impact on your health, and the importance of quitting
- Substance use issues, including alcohol/drug use can affect your HIV treatment and overall health, how to tell if alcohol use is a problem, and whether you should be referred for substance abuse treatment
- Mental health issues, including questions about any mental health symptoms you may be having, and whether mental health treatment may be helpful
- Referrals for other medical issues you may be experiencing
- The meaning of lab test results
- The need for any possible surgical procedures
- Any clinical trials or research studies that may be relevant for you
Nurses and case managers often have more time to answer any follow-up questions you may have about what you discuss with your provider and can assist you in accessing a range of services that can help you succeed in treatment, particularly around:
- Understanding your HIV treatment plan, including how many pills of each medicine you should take; when to take each medicine; how to take each medicine (for example, with or without food); and how to store each medicine
- Understanding possible side effects from your HIV medication and what you should do if you experience them
- Developing medication adherence strategies and ways to overcome any challenges you may have keeping up with your medical appointments
- Getting services that can help you manage any issues that might impact your health, such as mental health or substance abuse treatment, housing assistance, food assistance, and other resources that exist in your community
- Helping you better understand lab reports, tests, and procedures
- Accessing insurance and pharmacy benefits you may be eligible for, and other aspects of paying for care and treatment
- Understanding other medical conditions you may have
- Getting help to quit smoking and resources that are available to assist you