Talking to your doctor about HIV

3 in 4 people living with HIV say there’s at least one issue they’re uncomfortable discussing with their healthcare provider (HCP). Having a good relationship with your doctor where you can speak openly will ensure you get the best HIV care for you.^1-4

WHY DO I NEED TO BE ABLE TO TALK TO MY HCP ABOUT HIV?

Being able to talk to your HCP about HIV is important – it can help ensure you’re on treatment that works for you, and aligns with your lifestyle, preferences and long-term health goals.^2,4

Your HCP is a wealth of information on HIV and they can help you learn more about the condition. Knowing things like what lab tests you’re having, what your medications are and resources available within your community can help you to have meaningful conversations about your HIV care.^2,4

Different communities can face different challenges when living with HIV including stigma. Your appointments with your HCP should be a space for you to have judgement-free conversations, where they help address concerns that are unique to you and your community, and ensure your experiences are acknowledged and respected.²

Working together with your HCP to make choices that are right for you is a process called shared decision-making. It’s a two-way conversation where your doctor offers medical guidance; helps you stay up to date with the latest medicines and provides connections into other resources. At the same time, it’s important that you share more about your values, lifestyle and what matters most to you – this includes all aspects of your overall wellbeing from physical to mental or emotional health.

STARTING THE CONVERSATION

Every person’s journey with HIV is unique – and it can change over time. As life priorities change, it’s important to feel confident in owning what’s next in your HIV treatment journey.

Hear from four people living with HIV about a conversation changed everything for them:

CONVERSATIONS START WITH ME, MYSELF & HIV

“THE KEY TO THE SUCCESS IS TO HAVE THE RELATIONSHIP WITH THE DOCTOR.” – GREG, DIAGNOSED WITH HIV IN 2018

It wasn't always easy, but through building his relationship with his doctor, Greg began to facilitate open and honest conversations about his needs.

“THE MOMENT YOU START SPEAKING ABOUT IT IS LIKE AN IMPRESSIVE RELIEF.” – XIANA, DIAGNOSED WITH HIV IN 2012

Through taking an active role in her diagnosis, Xiana empowered herself and began to truly own what's next in her HIV treatment journey.

“NOW THAT I CAN SPEAK OPENLY, THE FREEDOM IS AMAZING.” – OPHELIA, DIAGNOSED WITH HIV IN 1990

Ophelia realised that she was the only person who could make a change in her treatment. By growing her knowledge about her treatment options, she found the one that best fit her individual needs.

“I DIDN'T STAY ALONE. I COMMUNICATED MY DESIRE TO LIVE.” – AXEL, DIAGNOSED WITH HIV IN 1989

Axel realised that it wasn't too late to make a change. By communicating his needs to his doctor, he found a regimen that worked for him.

PLANNING FOR YOUR APPOINTMENT

Talking about your health and personal experiences can feel daunting, especially when it involves sensitive topics like mental health, sex, or drug use.¹ But you’re not alone in feeling that way.

Your HCP is experienced in discussing personal matters and may have encountered people in similar situations.^2,3 Remember that they’re there to support you, and anything you share is confidential: they can’t discuss your treatment with anyone else without your consent.⁴

Whether you are newly diagnosed with HIV or have settled into your treatment and are undetectable, you will likely have regular appointments with your HCP. These appointments are important because they track your progress and ensure your treatment is working for you.^12,15

For some people living with HIV, appointments may take place virtually – via phone calls, video calls, or chat messaging. As this may not suit everyone, you can always talk to your HCP about finding a format best suited to you.^4,12

Here are some steps and tools to help you get ready:^12,13

Make a list of all the drugs you are taking: prescription medication, any recreational drugs, supplements and vitamins will be useful for your HCP to take into consideration regarding your HIV care.
Keep a note of your symptoms or concerns prior to the appointment: these may include side effects of your medications, problems with sleeping or eating, intimacy concerns, mental health problems or issues around HIV stigma.
Write down your questions beforehand or use a conversation guide to help you plan: ViiV’s conversation guide offers practical tips for discussing your needs and being an active part of your HIV care. You can download it to your phone or laptop, fill it out, save it for later, or print it to share with your HIV care team.
Consider bringing a friend or peer supporter to your appointment: their presence might boost your confidence and help you feel more comfortable asking questions or speaking up – especially if you’re newly diagnosed and just beginning your HIV care journey.^5,6

Watch as Raif Derrazi. HIV activist and person living with HIV and Dr. Kimberly Smith share tips on how to start the conversation with your doctor, so you can build a relationship that feels open, strong, and supportive from the start.

WHEN AND HOW OFTEN SHOULD I TALK TO MY HCP?

How often you see your HCP will depend on several factors, including when you were diagnosed, whether you're currently on treatment, and if you're experiencing any health changes, such as illness or pregnancy.¹⁵

If you are living with HIV, on treatment, you will typically have check-ups every three to six months.However, if you were recently diagnosed or are starting a new treatment plan, you may need to see them more frequently. You and your HCP will be able to determine how regularly this should be.^11,12,15

Aside from your regular appointments, you can contact your HCP to schedule an appointment if:^4,5,16

You’re feeling physically or mentally unwell.
You notice any new or unusual symptoms.
Your treatment is affecting your quality of life.
There are significant changes in your lifestyle or personal circumstances.

REAL CONVERSATIONS

Hearing the experiences of other people living with HIV may make you feel more at ease discussing your health with your HCP. With more HIV treatment options available than ever before, now is the time for more open and honest conversations between individuals and their HCPs.

ViiV partnered with The Skin Deep, an Emmy Award-winning company, to share honest conversations between people living with HIV and HCPs. Watch below or access the full series on Youtube.

FROM STIGMA TO STRENGTH: WOMEN’S PERSPECTIVES ON HIV

Mercy, born with HIV and Vanessa an HIV HCP discuss the importance of getting to know patients on a personal level to drive better health outcomes.

FACING HIV: STORIES OF SUPPORT AND SAFE SPACES

Antar, an advocate for people living with HIV and Zandraetta an HIV HCP discuss creating safe spaces where people can share their experiences and receive the support they need and deserve.

NAVIGATING HIV TOGETHER: A PATIENT-DOCTOR JOURNEY

Rebecca, a person living with HIV and her doctor, Sanjay, discuss how they built a strong bond and the importance of treating the person in front of you and not the diagnosis.

BREAKING BARRIERS: A CONVERSATION ON INCLUSIVE HEALTHCARE

Angelique and Mikki discuss the importance of creating inclusive and safe spaces for people to feel comfortable to have honest and open conversations about their experiences and circumstances.

I AM MORE THAN MY DIAGNOSIS: LIVING WITH HIV

Virgil, a person living with HIV and Lance, an HIV HCP discuss how stigma and misunderstanding impacts HIV care.

PASSION AND PURPOSE: SUPPORTING THOSE LIVING WITH HIV

Chris, an advocate living with HIV, and his colleague Marta, an HIV HCP discuss how they both found their passion for making life easier for those impacted by HIV.

Abbreviations

HCP, healthcare provider; LGBTQ, lesbian, gay, bisexual, transgender, queer; HIV=human immunodeficiency virus.

References

Hurtaud A, Laurent C, Leïla Bouazzi, Merland ET, Barbe C. Factors associated with unvoiced concerns of patients attributed to embarrassment, modesty or a fear of being judged. BMC Primary Care. 2025;26(1). doi:10.1186/s12875-025-02804-2.
Fine S, Vail R, Merrick S, et al. Clinical Guidelines Program Approach to Shared Decision- Making. Available from: https://www.hivguidelines.org/wp-content/uploads/2023/08/NYSDOH-AI-Clinical-Guidelines-Program-Approach-to-Shared-Decision-Making_9-14-2023_HG.pdf Accessed: March 2026
NIH. National Institute of Aging. How To Talk With Your Doctor About Sensitive Issues. Available from: https://www.nia.nih.gov/health/medical-care-and-appointments/how-talk-your-doctor-about-sensitive-issues Accessed: March 2026
Terrence Higgins Trust. Healthcare and insurance. 2022. Available from: https://www.tht.org.uk/hiv/being-diagnosed-hiv/telling-people/healthcare-and-insurance. Accessed: March 2026
Øgård-Repål A, Berg RC, Fossum M. Peer Support for People Living With HIV: A Scoping Review. Health Promotion Practice. 2023;24(1):172-190. doi:10.1177/15248399211049824.
CDC. Talk HIV. Available from: https://www.cdc.gov/stophivtogether/talk-hiv/index.html Accessed: March 2026
Hurtaud A, Laurent C, Leïla Bouazzi, Merland ET, Barbe C. Factors associated with unvoiced concerns of patients attributed to embarrassment, modesty or a fear of being judged. BMC Primary Care. 2025;26(1). doi:https://doi.org/10.1186/s12875-025-02804-2
NIH. National Institute of Aging. How To Talk With Your Doctor About Sensitive Issues. Available from: https://www.nia.nih.gov/health/medical-care-and-appointments/how-talk-your-doctor-about-sensitive-issues [Accessed: September 2025]
Terrence Higgins Trust. Healthcare and insurance. 2022. Available from: https://www.tht.org.uk/hiv/being-diagnosed-hiv/telling-people/healthcare-and-insurance [Accessed: September 2025]
Kim GS, Choi JP, Yi JM, Shim MS. Development of a Question Prompt List for Patients Living With HIV and Assessment of Their Information Needs. The Journal of the Association of Nurses in AIDS Care : JANAC. 2019;30(5):575-583. doi:https://doi.org/10.1097/JNC.0000000000000080
National HIV Curriculum. Wood B. Core Concepts - Switching or Simplifying Antiretroviral Therapy. 2025. Available from: https://www.hiv.uw.edu/go/antiretroviral-therapy/switching-antiretroviral-therapy/core-concept/all [Accessed: August 2025]
HIV. gov. Seeing Your Health Care Provider. Available from: https://www.hiv.gov/hiv-basics/staying-in-hiv-care/provider-visits-and-lab-test/seeing-your-health-care-provider [Accessed: August 2025]
CDC. Talk HIV. Available from: https://www.cdc.gov/stophivtogether/talk-hiv/index.html [Accessed: September 2025]
Øgård-Repål A, Berg RC, Fossum M. Peer Support for People Living With HIV: A Scoping Review. Health Promotion Practice. Published online October 23, 2021:152483992110498. doi:https://doi.org/10.1177/15248399211049824
Terrence Higgins Trust. Your HIV clinic. Available from: https://www.tht.org.uk/hiv/living-well-hiv/healthcare/your-hiv-clinic [Accessed: September 2025]
HIV.gov. Making Care Work for You. Available from: https://www.hiv.gov/hiv-basics/staying-in-hiv-care/provider-visits-and-lab-test/making-care-work-for-you?utm_source=chatgpt.com [Accessed: September 2025]

NP-GBL-HVU-COCO-260001 | May 2026

TALKING TO YOUR DOCTOR ABOUT HIV