What’s the one thing you wish your doctor or care provider knew about you and about treating your HIV?
“As long-term survivors we are dealing with multiple comorbidities and providers need to be able to treat your HIV while understanding your other health issues to avoid medication conflicts or side effects that may exacerbate your other health issues.”
—Larry Frampton
“I share everything with my provider, past and present. Everything.”
—Mario Marquez
“I was told one time by a physician assistant that I had 15 minutes to talk. I told her that if she would be quiet then I could tell her my issues that I was experiencing. Bedside manner and cultural competence are necessary to treat me now that I’m in my 50s.”
—Jack R. Miller
“Doc, I’ve lived a long time with this... what do we need to do to keep it up?
—Greg Knepper
“Many people experience diarrhea, which can be caused by medication or by HIV itself. I discovered something by accident. I never thought about being lactose intolerant. I switched from regular milk to lactose-free milk. Ten days later, my diarrhea almost stopped. Such a simple thing, doctors should ask about this simple change.”
—Jimmy Ontiveros
“I wish my MDs would treat me like an 80-year-old man in a 65-year-old’s body. That reality doesn’t make sense to them because I don’t look 15 years older. [But] I wake up every day feeling like I have an 80-pound sack of potatoes on my shoulders. That’s what premature aging does to you.”
—James Chandler Hovey
“Just because I have HIV doesn't make me more likely to have other STIs. It implies the doctor doesn’t believe what we discuss as to my intimate life. Stop ordering a battery of unnecessary STI screenings when I have not been sexually active since my partner died in 2016! The doctor’s office dealt with paying the co-pay after I told the lab tech, ‘Do not run these tests—they are unnecessary and inappropriate.’ And she did anyway. (Of course, every single result was negative.) I was supposed to pay almost $350 in copays for these tests, but they are dealing with it now.”
—Xio Mora-Lopez
“@Xio Mora-Lopez: “Unfortunately, if any of your care is paid for by Ryan White funds (including ‘just’ case management), annual screening at least for syphilis is a required/reported quality measure, and there is no opt-out/exclusion in the tabulation for those who report not being sexually active. That being said, you absolutely have the right to manage co-pay issues, and they do have to have your consent to run any labs. I know from monitoring lab results in our clinic that a surprising number of positives come back on those who report having ‘no sexual activity,’ which is the justification many offices use, but it is never acceptable to go against a patient's expressed instructions.”
—Michael Luciano
“Sometimes I just need to go over my medical history and us both just laugh.
I know I’ve beat the odds and I'm still here fighting. Makes for one hell of a story.”
—Derek Canas
“The fact that I stand before you today because of HIV does not mean that HIV is the only thing that determines my life. I am a human being with preferences, thoughts, political views, relatives and beliefs, and HIV is not something that defines me. I’ll just take the treatment I need and get on with my life the way I started it. So, whatever you think about HIV, any feedback you give me should be unbiased and purely scientific. (This is a common opinion based on the feedback we have received from all our counselees for about 10 years.)”
—@redribbon
“I am a WHOLE person, not separate parts, parceled off to different doctors. Everything in and on me is connected to everything else. Know about, care about, and treat the entire person.”
—Brian Olsen
“I can’t think of anything my current primary/ID fellow and her preceptor (supervisor) don’t know about my HIV treatment history, thanks to the extensive meds chronicles I brought to my first appointment. They appreciate my pharmacology knowledge and had no problem allowing me to drive a meds change when my viral load got blippy last fall due to the lactose-based binder in Odefsey.”
—DavidMichael Phillips
“Sometimes the provider needs to listen to the concerns of the person living with HIV without interruption.”
—Timothy S. Jackson
“I worry that what happens (hearing loss, arthritis, etc.) is ‘normal’ aging for someone in his mid-50s or is it accelerated aging brought on by nearly 30 years of constant inflammation brought on by HIV.”
—Eric Moore