As part of its “Getting to Zero Strategy” launched in 2011 to end the HIV epidemic by 2030, UNAIDS initiated the global 90-90-90 target in 2014 (90 percent of people living with HIV (PLHIV) know their HIV status, 90 percent of diagnosed PLHIV on Anti-Retroviral Therapy (ART) and 90 percent of PLHIV on treatment have suppressed viral loads). To meet this ambitious goal, governments began to roll out robust HIV testing, linkage to and retention in care programmes. 

 Sadly, the novel corona virus, which caused serious disruption to HIV services, also created fear in PLHIV who sometimes have underlying medical conditions and have an increased risk for severe illness if they contract COVID-19.

 This fear and its effect on PLHIV cannot be ignored. Is the new virus moving people away from in-person clinical management to self-care management? Is it increasing mental health challenges? In short, how is it affecting PLHIV?  Let’s hear from someone who is happy to share her experience.

This conversation has been edited for length and clarity.

Q:           Please tell us how Covid-19 has impacted your life?

 J:             COVID-19 has changed my life for the worse. I’ll start by saying something that most women can relate with: COVID-19 is the only thing that has made me leave home without putting on lipstick. On a more serious note, I’ve been shielding,^[1] and it has not been easy; I feel like a prisoner in my own home. COVID-19 is dehumanising. We humans are social beings; without a social life, I get depressed; and the news is also depressing, all gloom and doom. \It was hard to receive several calls and messages from the National Health Service (NHS) and support services offering to bring me food. Though they were trying to help, I actually felt more vulnerable. Besides, I felt I was losing the little freedom that I had left: to go out and buy food, take a walk, feel fresh air and breeze on my face.

 Q:          Do you feel the need to protect yourself more because you are living with HIV?

 J:            Definitely. COVID-19 came at a very critical time for me: my CD4 count had dropped to dangerously low levels- below 200- and my viral load was in the thousands meaning I needed to change to a new ART combination. It was challenging; I couldn’t miss hospital appointments as I needed blood tests to monitor how I was doing with the new Anti-Retro Virals (ARVs). However, once I braved it and attended my first hospital appointment, things became easier; I am no longer scared of hospital appointments. The other big issue is that I am diabetic and know that this puts me at a higher risk of catching Covid-19 and/or of dying if I do.  All of this makes me feel very vulnerable and I take shielding seriously. There must be many others like me on Highly Active Antiretroviral Therapy (HAART), the side effects of which puts us at risk of developing conditions such as diabetes, coronary heart diseases etc.

 Q:          Do you find yourself drawing parallels between HIV and COVID-19?

 J:            Honestly, no. Although they are both viral infections, I’d rather have HIV than COVID-19. HIV has not created in me the level of fear that COVID-19 brought to me and the entire world. Besides, HIV is not easily transmitted. People still believe scary myths about HIV/AIDS mainly because of stigma and ignorance but an HIV diagnosis is no longer a death sentence. With biomedical advances, PLWHIV can live a normal life. Look at me, I was diagnosed in 2001 and started ART immediately.  I lead a healthy and productive life and expect to live long. COVID-19 is proving different: unpredictable; preventing it is not as straight forward as preventing HIV, you feel exposed to Corona virus  wherever you go and whatever you do. Sadly, COVID-19 is sweeping away HIV support services. It seems the world is forgetting that HIV still exists, and decades of research has failed to find a cure or vaccine.

 Q            Do you think the NHS needs to do more to shield/help you?

 J             I don’t know if there is any more support the NHS can provide to shield PLWHIV. However, more help is needed to prevent the scraping of support in the name of COVID-19. HIV/AIDS medical professionals understand the terrible life-changing impact of an HIV/AIDS diagnosis; we need support for life.  It’s possible to live a healthy life but, decades of experience have shown that this can be achieved only with continuous medical and emotional/psychological support to ensure, in particular, that people on ARVs remain compliant, maintain an undetectable viral load and reduce transmission rates as U=U (Undetectable equals Untransmissible). Additionally, HIV services are needed to provide education, prevention and other support services.

 

HIV medical appointments are now set to become by telephone/video calls.  Our fear of the digital will prevent most of us from trusting this new system.  I know for a fact that most people over 50 (particularly migrants, refugees, asylum seekers or BAME) are not ICT literate. They are not confident enough, uncomfortable talking about medical issues over telephone/video calls. Personally, I don’t feel the support and compassion via telephone/video consultation. How well can you support or feel for someone you cannot see? Body language is key in communication.

 

Lastly, the stigma surrounding HIV/AIDS makes most PLWHIV paranoid. I want my medical information to remain confidential and its disclosure should remain my decision and mine alone. For example, the HIV Clinic recently emailed a medical report to me; it freaked me out. I was shocked and shaking. In the name of COVID-19, they did not bother to seek my consent. If hackers infiltrate the NHS database, how difficult will it be to hack into a patient’s email? I told the Clinic to never email me confidential information again.    I should mention that you can opt for a face- to- face appointment if you have no COVID-19 symptoms and are happy to respect COVID-19 safety measures. Talk to your clinic about your options.

 

Q:           How was lockdown for you?

 J:            Please refer to question 1. Although shielding measures have been eased, I am not relaxed.  I can’t take chances though I miss family and friends’ hugs terribly. Months of shielding have conditioned my mind. They say habit is second nature.  Outside my front door is a scary world, a threat to my already vulnerable life. Will I ever feel normal again? Only God knows but I hope that with more support, especially mental health support, I can overcome the terrible fear created by COVID-19. L’espoir fait vivre comme disent les Français (Hope gives life as the French say).  

 As a last word, PLHIV should remember that in this COVID19 new world order, we need a united front to fight for continuous support. Stay well and safe everyone.

 

^[1] Shielding: UK government’s programme for people deemed most at risk of becoming seriously ill from the novel coronavirus which advises them not leave their homes and minimise all face-to-face contact until at least the end of June.