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I am a woman living with HIV for 25 years and I have been professionally involved in a charity, Positively UK, providing peer support to people with HIV for more than 2 decades.
First, I would like to state to obvious: People living with HIV are very diverse. We are young, we are old, some of us are ciswomen or cismen, we are also transgender or nonbinary, we may have been recently diagnosed or lived with HIV for a long time, and we may have also been born HIV positive. We may have acquired HIV sexually, through drug use, or through a blood transfusion. We can be of any ethnicity, sexuality, and skin color.
Many of us live at the intersection of different drivers of marginalization and exclusion. Prejudice and injustice—concerning race, gender, socio-economic status, sexuality, and more—color our experiences of living with this virus and are combined with the huge burden of HIV stigma, especially internalized stigma.
So when considering first-line antiretroviral therapy (ART), it is important that the healthcare team is aware of the personal and social circumstances of the patient and discusses the options with them.
What Affects Us as Patients
Many young people with HIV struggle with adherence, especially during adolescence. ART needs to be simple—if possible, 1 pill once per day without food restrictions. This is a group who may also benefit from long-acting treatments, if these are available.
Gender and reproductive intentions need to be discussed. Women will want to know that if they choose to have children, their treatment can be used in pregnancy and that it can be taken alongside contraception, if needed. Older women need to have information about how ART may interact with hormone replacement therapy.
As we get older, many of us will start to have other illnesses and will need to take into consideration how ART will have an impact on comorbidities, as well the potential for interactions with other drugs that we are taking.
When switching ART, the individual circumstances of the patients need to be considered. It is important to understand and explain reasons for switching therapy and what the options are. Is it because of drug toxicity? Is it because the person had challenges with adherence? If so, why is that and how will the new treatment help address this?
What You Can Do as Healthcare Professionals
Here’s just one example of how what you do as a healthcare professional matters.
I noticed that, for a long time, women of color coming to our HIV peer-support groups were complaining of rapid and considerable weight gain after starting a particular ART, despite there being no change in diet or lifestyle. When they spoke to their doctors, they were dismissed. The weight gain had an impact on their health: increasing blood pressure and risk of developing type 2 diabetes. It also had an impact on their self-esteem as they were feeling less attractive.
However, the doctors didn’t listen and often blamed their diet or lack of exercise. Recently, of course, research started demonstrating links between certain antiretrovirals and weight gain for women of color, in particular.
This is what I recommend for healthcare professionals who are individualizing ART for people with HIV:
Learn More at EACS 2021
Join an interactive case-based symposium at the forthcoming European AIDS Clinical Society meeting in London, United Kingdom, or by live webcast to hear expert faculty discuss patient-centered ART. Discussion will include considerations for individual patient factors and appropriate patient counseling regarding the anticipated clinical role of new and investigational ART regimens in individualized care.
What are your biggest challenges and what new strategies have you identified when providing patient-centered HIV treatment? Answer the polling question and join the discussion below!