Building a relationship with your HIV healthcare provider

While there is no cure for human immunodeficiency virus (HIV), there are treatments that allow people with HIV to have a good quality of life. HIV is treated with antiretroviral therapy (ART). These medications suppress the viral load, or the amount of the virus in the body. The goal of treating HIV is to get the viral load to undetectable levels and keep it there.

Because treatment for HIV is ongoing and lifelong, establishing a good relationship with your healthcare provider is an essential part of the process.

Routine appointments

How often you see your healthcare provider will depend on where you are with treatment, how well treatment is going, and any other important factors related to your health, such as other conditions or other infections.

Most people with HIV will have an appointment with their provider several times a year. During the first two years following diagnosis, appointments may be more frequent.

These routine appointments will include blood tests to measure viral load and other biomarkers that indicate treatment is working.

Appointments will also provide an opportunity to talk to a healthcare provider about how treatment is going—how you feel physically, your emotions and mental health, and any questions or concerns you have about treatment or your health.

Finding the right provider

Treatment for HIV is typically overseen by a primary care provider. This is the provider who will order tests and make your diagnosis.

A healthcare team may also include a variety of other healthcare providers—registered dietitians, mental health practitioners, case managers—who help you navigate the experience of living with and treating HIV.

Whether you are looking for a primary care provider or looking to add a member to your HIV healthcare team, here are some qualities you want to look for in a provider.

• Ideally, you want to work with providers who specialize in treating HIV. At the very least, you want providers who have experience treating HIV.
• You should feel comfortable talking to your providers. HIV affects every aspect of a person’s life and getting the most from treatment sometimes requires talking openly and honestly about personal topics such as sexual activity, substance use, and mental health.
• You should feel that your healthcare providers are a source of support, that they work with you collaboratively when making decisions, and that your questions and concerns are taken seriously.
• Your providers should accept your insurance coverage. The out-of-pocket expenses of medications, lab tests, and appointments can add up. You want to ease the cost as much as possible. Healthcare social workers and case managers can also help you navigate the finances of treating HIV.

Getting the most out of your appointment

Whether you are seeing a healthcare provider for the first time or are getting ready for a routine follow-up appointment, you should take some time to prepare.

• Contact the office ahead of time and ask about any paperwork they need, including insurance paperwork and access to any prior medical records.
• Take notes on how you are feeling, including any fatigue, how you are sleeping, your stress levels, and your moods and emotions.
• Write a list of questions and topics you want to discuss, with the most important questions and topics at the top of the list.
• Prioritize anything that prevents you from adhering to your treatment. For example, make sure to discuss whether you are having trouble taking medications on time, do not clearly understand the dosing instructions, or if the medications are too expensive.
• Be honest about your lifestyle and habits—the foods you eat, how often you exercise, and smoking. Your provider may ask about these topics or you may bring them up yourself, but they are important to discuss because they can affect your treatment and overall health.
• Ask about other preventive healthcare that your providers recommend, such as vaccinations and routine screenings for other conditions.

While managing HIV can feel like a lot of work, remember that putting in the extra time and effort is essential to getting the most from treatment.