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Louis "Kengi" Carr

Louis

Louis "Kengi" Carr is a California native, born and raised in Santa Monica. He is a published photographer, writer and guest speaker. Formerly a private chef and events caterer, this formerly homeless, HIV positive, proud Angelino is now a activist and advocate for people with HIV and homeless individuals. He is the creator/founder of Project Kengikat, Do Something Saturday, Unplugging HIV and the author of 29 Months.

A lover of photography, blogging and vlogging and USC Football, Kengi has been rediscovering his love for Los Angeles, ceramics, painting and cooking while elevating the conversations of HIV and homelessness. He enjoys being outdoors, spending quality time with his friends and his amazing rescue dog Dodger.

Dec29

A change in care - and the importance of being proactive

Tuesday, 29 December 2015 Written by // Louis "Kengi" Carr - L.A. Correspondent Categories // Health, Treatment, Living with HIV, Opinion Pieces, Louis "Kengi" Carr

Our LA guy Kengi with how his HIV care and treatment has evolved and says “stand up for yourself without apology. After all, you have to live with HIV and you should be completely comfortable and at ease with your HIV care”

A change in care - and the importance of being proactive

It’s 10:57 pm on December 16, 2015 and I’m just shy of two days before my 47th birthday on the December 19th. I can’t even begin to explain how awesome another year of life has been or how HIV has been pretty much non-existent in my everyday life. 

The fact that HIV is irrelevant to me is cause for celebration, because as you recall, I was homeless when I was diagnosed on April 3, 2008 and things did not get off to a great start. I went through five doctors and three clinics in the first year alone and I wasn’t even on medication. If I couldn’t trust them with my basic care, how in the hell could I trust them with my overall health and wellness, let alone trust their advice and guidance in choosing which medication was right for me once that time came. 

Moreover, those doctors simply did not get or they were too arrogant to even try to get, that I was dealing with a banquet of things besides HIV. I think many doctors and even service agencies fail to see that many people diagnosed with HIV or AIDS have other things they need to take care of besides their diagnosis.  

It was June, 2009, a full year and two months before I found a doctor and care clinic that I trusted. It was Dr. Ardis Moe who fully understood that housing was something that would improve my overall health and wellness. She fully understood that not addressing my housing needs, I could not fully address my HIV care. My prior doctor at USC’s Rand Schrader Clinic refused to sign the forms for housing. Which would have meant I would be passed over for another permanent place to live. Imagine not being able to move forward because someone didn’t do their job or some doctor refuses to sign the paperwork. 

From 2009 to 2013, Dr. Ardis Moe was an amazing doctor. Under her care HIV became something I no longer worried about and my fear of death from not having access to care was gone. But 2013 ushered in the preparation of the Affordable Care Act and huge changes for HIV care which many clinics were not prepared for. For me that meant not having access to medication I’d just chosen to take. With my doctor on vacation my care felt non-existent and not having access to medication simply was not an option for me. It was time to move forward. 

After three weeks of no access to Stribild and getting no place with my clinic, I made the switch to the Jeffry Goodman Clinic at the Gay and Lesbian Center and right away that was like going from the frying pan into the fire. The staff is rude at best on a good day, the lab techs wear what I would describe as riot gear. It feels very Tuskegee Experiment part two in there. My doctor was just odd and not helpful at all and had absolutely no answers when I asked questions. Twice I had to remind him and what we spoke about in the last appointment, but it was the pharmacy that was the worst. Again, I was not getting my medication because someone had not done the proper paperwork which no one was willing to accept fault for, but I suffered because once again I was not getting the one and only medication I elected start taking. At this point I was done with HIV care and regretting that I decided to start taking HIV medication when it wasn’t required. HIV stigma is alive and well at this place. 

December 2013, with the love and support of dear friends, I once again changed clinics and doctors. I have to be honest when I say I was not looking forward to going to AHF and the fact I couldn’t simply call or walk in didn’t make me feel comfortable. I just don’t get the whole “middle man” approach, but I got past it and finally got an appointment with the doctor close friends suggested and one I did some reading on.  After my first appointment with Doctor James Adams I felt like I had made the right choice. 

So here we are December 2015, two years later and I’m still with Doctor Adams and once again HIV is not something I’m worried about and there hve been no blips, no screw ups and no excuses when it comes to my HIV care. More importantly he listens and hears me. I don’t feel rushed or that I’m bothering him. He’s an amazing doctor and his nurses and front office staff are awesome. 

I’m ending 2015 with HIV once again off my radar, a doctor and care team I fully trust, plus I’ve started a new medication. Not because there was something wrong with the other, but because this new medication is better for my overall health and wellbeing. 

This is the first week taking Genvoya, the new HIV pill from Gilead. I’ve had no issue with this pill whatsoever and making the switch was just as easy as changing my socks. 

To anyone reading this who might be having a hard time with staying in care or not at all happy with their care team let me remind you to be your own advocate. Stand up for yourself without apology. After all, you have to live with HIV and you should be completely comfortable and at ease with you HIV care.  

Love you, stand up for you, fight for you, cheer for you and live your amazing life with HIV off your radar.

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