World AIDS Day

World AIDS Day: and What I have Learned by Being with People Who Have HIV/AIDS

A few years ago, I did a Pulse PACC (Patient Activation through Community Conversations) with a group of thirteen participants all living with HIV /AIDS.  They chose topics that are important to them about receiving medical care so they can share their experience with others, learn what has worked for others, and learn ways to be an active participant in their own medical care.  There is no advice given.  Participants are permitted to only share what has already worked for them so no one hears the words “you should”.

One of the questions that was popular and checked off on the list was: Do you have a healthcare proxy and how did you choose that person?

When I read off the question (all questions are anonymous so no one knows who wants to talk about what) no one spoke.  I told them that five people wrote that this was important.  Finally, one young woman spoke.  “How can we choose someone to make decisions for us if we don’t want anyone to know we have this disease?”   

Her question stunned me.  Something I never thought about.  Others shared their similar thoughts and concerns out loud and the conversation became how other chose someone as a support person or to be listed on their proxy form.   Some even offered to be that person for the one’s who had no one.  The discussion then became what the healthcare proxy form is. I handed some forms out and learned a lot that day.

AIDS, in my generation is still a scary topic.  I remember when people died from HIV /AIDS, now they live with it.  Still, many people feel that they wear a sign on them that says that they are promiscuous, gay or a drug abuser.  We know now that none of that may be true – but even if it is, doesn’t everyone deserve safe care?  And, if we want safe care, we must be honest about our health and habits to the medical team without fear of being judged.

According to the World Health Organization almost 38 million people are living with HIV/AIDS worldwide.  In 2018, 770,000 people died from HIV-related illness which is over 50% fewer who died in 2004.  Talking about the disease, as any disease must be part of treating a patient safely.  Being honest and open about your health and healthcare must take priority.  People need to seek medical attention from clinicians who do not show a bias and have experience with the care you need.  If fear or embarrassment is an issue, people should bring a support person who could help a them feel in control and get the care needed.  The support person should know what the patient’s fears and concerns may be so the support person can be prepared to help address them.   And, if you know someone who may be nervous about seeing a clinician because they have HIV/ AIDS, offer to go with them to their doctor’s appointments.  Having a “team” with them could help.

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