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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
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.