Starting conversations about health and wellness with loved ones is not easy. These discussions are often harder when someone is living with a condition or disease that is highly stigmatized, such as HIV.
Thankfully, living with HIV has drastically changed for the better during the last few decades. This shift is mostly due to treatment advancements and societal progress. But, there is still room for more progress.
Data from ViiV Healthcare’s Positive Perspective Study Wave 2 (PP2), one of the largest studies collecting health information from people living with HIV, revealed how honest discussions and knowledge sharing are critical to ending the HIV epidemic. Between April 2019 and January 2020, more than 500 people living with HIV aged 18-84 from North America took part in the global study, providing first-hand information about how treatment affects health, well-being and quality of life and how open dialogues with support networks can lead to better care.1
If you are trying to start a conversation with a friend or family member about HIV, here are a few questions to help show you are an ally and advocate.
1. Do you feel comfortable talking to your doctor about any treatment concerns?
Many people living with HIV don’t feel comfortable having open conversations about their treatment and how it impacts their daily lives.2PP2 findings showed that high engagement between doctors and people living with HIV was associated with significantly better reported health outcomes.1 Yet, 65% (n=338/520) of North America study participants reported they want to be more involved in their treatment.2
Empowered people living with HIV who are involved in open dialogue and joint decision-making with their healthcare provider were more likely to report an undetectable viral load and improved aspects of their quality of life.1 Ensure your loved one has an active voice and is comfortable talking to their doctor about all aspects of care.
2. Do you face any challenges when taking your HIV medication?
Many in the HIV community experience numerous treatment-related challenges within their daily lives, including physical, emotional and psychosocial concerns.3 However, these concerns often go unsaid because of shame and stigma. Nearly two out of three (n=346/520) North America study participants shared that they have hidden or disguised their HIV pills to avoid sharing their status.1
While these treatment challenges may seem small, they have real impacts on health. People who reported ARV treatment-related challenges such as difficulty swallowing, side effects and emotional concerns such as fear of disclosure, adherence anxiety and the daily reminder of HIV, reported poorer health outcomes.3 Each member of the HIV community has diverse needs, and advocating for a tailored treatment approach that works best for their lifestyle and wellness goals is important.
3. Do you know about U=U?
Undetectable equals Untransmittable (U=U) means that people living with HIV, who are on treatment and maintain undetectable levels of the virus, cannot transmit HIV to their sexual partners.4
PP2 Advisory Committee member Bruce Richman, who is the Founding Executive Director of the Prevention Access Campaign and Founder of U=U said, “A primary call to action from our research is to ensure guidelines and policies underscore the importance of U=U to the health-related quality of life for people living with HIV, and to encourage all healthcare providers to share this information.”
Results revealed people living with HIV can experience heightened levels of emotional and psychological issues as a result of dealing with stigma so discussing U=U with your loved ones and publicly to raise awareness will help minimize stigma and discrimination.1
If we all come together to support the HIV community, we can ensure the progress we’ve made continues; facilitating these important conversations with loved ones is a great step forward.
Learn more about ViiV Healthcare’s work with the HIV community here: https://viivhealthcare.com/en-us/supporting-the-community/.
1 ViiV Healthcare. Positive Perspective Study Wave 2 Results Report. Published September 2020. Accessed December 2020. Accessible at: https://viivhealthcare.com/content/dam/cf-viiv/viiv-healthcare/en_GB/files/22_09_20_PP2_Global_Results_Report_FINAL_(September_2020).pdf
2 de los Rios P, Young B, Muchenje M, Van de Velde N, Okoli C. Haves vs. Have-Nots in Healthcare Communication: Examining the Paradox Where PLHIV Who Need Quality Discussions With Their Providers the Most, Access It the Least. Poster 1017. Presented at Infectious Diseases Week 2020 Congress, October 21 – 25 2020. Accessible at: https://d201nm4szfwn7c.cloudfront.net/5f95dbd7-245e-4e65-9f36-1a99e28e5bba/d5b137da-5da9-4059-b97c-17db83ecf706/d5b137da-5da9-4059-b97c-17db83ecf706_viewable_rendition__v.pdf?medcommid=REF–ALL-003187
3 de los Rios P, Allan B, Okoli C, Young B, Castellanos E, Brough G, Eremin A, Corbelli GM, Muchenje M, Mc Britton M, Van de Velde N. Treatment-Related Physical, Emotional, and Psychosocial Challenges and Their Impact on Indicators of Quality Of Life. Poster 1045 Presented at Infectious Diseases Week 2020 Congress, October 21 – 25 2020. Accessible at: https://3002a505d4f8666b1f13-6d0524d9c8a5052ce15209ae3ecb39a3.ssl.cf1.rackcdn.com//1402234-1602716940.pdf
4 Prevention Access. Risk of Sexual Transmission of HIV from a Person Living with HIV who has an Undetectable Viral Load. Published July 2016. Accessed December 2020. Accessible at: https://www.preventionaccess.org/consensus