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The ConfidentPatient:A Discussion GuideAbout HIV Care

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A marathon, not a sprint

Today, HIV treatment has transformed what’s possible. But long-term care isn’t just about staying on medication – it’s about making sure your treatment keeps working for your health, your goals, and your life.

Long-term treatment means a long-term relationship with your specialist, so who you partner with matters! Good communication can help keep your treatments on track. That’s why it is important you feel comfortable sharing your perspective. This guide can help you prepare for that next conversation.

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The road to undetectable

Are you newly diagnosed?

You may have heard the phrase “undetectable = untransmittable”. It means that with consistent treatment, the virus becomes undetectable in your blood and can’t be passed to others. Early treatment is key, so making the first appointment is an important step.

Have you fallen off your treatment plan?

It’s not too late to restart. And remember – you deserve a healthcare professional who’s knowledgeable and on your side. Find someone you can trust to check your viral load and go over treatment options that will work for you.

Questions for your doctor’s appointment

As your life evolves, so should your HIV care. It’s important to discuss how aging, life events (like pregnancy or new relationships), and other health conditions might affect your treatment plan.

Preparing a list of questions that can be updated between appointments can help. Here are some ideas to get you started:

Walk through lab results

  • What is my viral load right now?
  • What has changed? What seems to be working?
  • What does this mean for my immune system?

Plan to stay healthy

  • What should I keep in mind when aging with HIV?
  • How can I prevent opportunistic infections?
  • How do I talk to my partner about PrEP?
  • If I plan to become pregnant, what are my treatment options?
  • If cost or insurance issues arise, what programs can help me stay consistent?
  • Are there stigma-free resources or pharmacies you recommend if I'm worried about privacy?

Explore treatment options

  • If I am restarting or initiating treatment, how long before I can expect to see a change in my viral load?
  • What are the risks and benefits of making a change?
  • What are the advantages of each of my treatment options?
  • If I miss a dose, which types of regimens provide the most 'forgiveness' to keep me undetectable?

Navigate the practice

  • How often will we need to do blood work and physical exams?
  • How can I reach you between appointments if I have a question?
  • If we speak different languages, how do I request a translator?
  • If I have an issue and you aren't available, who should I ask for?

Symptom Check-in

What’s changed?

It is important to listen to your body and trust what it tells you. A journal or calendar can help you keep track of changes.

In the last month, have you experienced any of the following?

☐ Fatigue or lack of energy
☐ Numbness, tingling, or pain in hands and feet
☐ Night sweats or fever
☐ Unexplained weight loss
☐ Persistent cough or shortness of breath
☐ Bone or joint discomfort
☐ Skin rashes or new sores
☐ Changes in digestion or diarrhea
☐ Treatment fatigue, depression, or anxiety
☐ Swollen lymph nodes
☐ Sleep issues

The Check-up
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Getting comfortable with your doctor

Local HIV organizations, especially those serving your cultural community, can help connect you with doctors you feel comfortable opening up to.

Once you find the right person, these are some ways to help build a connection:

  • Share your story: Talk about what’s going on in your life. You never know what might be medically relevant.
  • Ask questions: This can build trust. How did they get into HIV treatment? What’s their approach to care?
  • Adopt a sex-positive attitude: A healthy sex life is your right. Speak frankly with your doctor about U=U and PrEP.

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