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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.

Aug27

Starting treatment: one year later

Wednesday, 27 August 2014 Written by // Louis "Kengi" Carr - L.A. Correspondent Categories // Louis "Kengi" Carr

Not everyone has it easy. Our LA guy Kengi says “It’s been a year and I fully regret starting treatment.” Why? Read on.

Starting treatment: one year later

It’s been a year since I started taking Stribild for the treatment of HIV. I was diagnosed on April 3, 2008, and my T-cells were well above the required guidelines for starting treatment and my viral load was also well below the required mark. By all accounts my body was doing an awesome job defending itself against HIV. In fact, my viral load went way down since I was diagnosed and my T-cells were way up.

However before leaving for Burning Man I made the choice to start treatment for a couple of reasons. The first being the fact that I have Sickle Cell Disease and my body is busy enough battling that, plus I made the decision shortly after being diagnosed that when my T-cells fell below 900 I would start treatment. I simply do not want my body to fight any harder than it already does. The other reason was that I was dating someone who is HIV negative and while we both used condoms I felt it was best to have another layer of protection between us.

I was undetectable in a few weeks; like I said my viral load was already very low. My T-cells are still very high and have bumped up a few times since starting HIV treatment. There have been no side effects to speak of. All n al,l taking Stribild has been absolutely no problem. However this has not been the case when it comes to having access to Stribild.

There were times when I was not able to take my medication because I did not have it. Let me be perfectly clear, I did not have  it because things went wrong on the medical side, not because I did not pick them up or just failed to take them.

Shortly after starting treatment I went about two weeks without my medication because my new insurer needed a prior authorization. The following month the same thing happened but this time it was over a month before I was able to have access to the Stribild. No one seemed to know how to correct this and I was told I was “over-reacting” and being “difficult” This is when I changed doctors, but that created another problem that could not seem to get fixed at the next clinic and once again I was without my medication.

Luckily there was no drop in my T-cells, but my viral load did climb higher than levels before I started taking Stribild. This concerned me and I began to ask tougher questions and wanted to know if I had built up a resistance. “Mr Carr you’re over reacting to this. It is ok to miss a few doses” is what I was told by my new doctor. He refused to test to see if I had any resistance. Again I was left with either remaining in a place where my medication was always late and now with a doctor I had no confidence in, so once again I started looking for a new doctor.

I’ve been with my current doctor for a few months. The first month was fine, but the following month there was a problem with having access to the Stribild. This has continued and recently I went two weeks without my medication. This time I reached out to another pharmacy to try to make things right, but I also reached out to my current doctor to inform him of the problems, but in the six phone calls to him there has been no return call., leaving me once again to question my care altogether.

For me the biggest thing has been fear of not being able to access care or treatment once I started it and that fear is now a reality.

I hear and read so much when it comes to blacks and HIV and much of it I know from experience is nothing more than words on paper. I’ve fought to remain in care and now I’m fighting for medication, but if I were to become diagnosed with AIDS the reports will say that I had some “guilt”, “shame” or “stigma” about being HIV positive. It will never say “The reason Mr. Carr is now battling AIDS is because the medical system failed”

I live my life with no regrets, but I’m regretting the decision I made to start HIV treatment and now it is something that I must live with. Because of how I’ve been treated and what I’ve heard from other blacks like myself, I no longer believe that starting HIV treatment before you must is something anyone should do. I do not believe that you can’t stop taking medications and I certainly don’t believe that clinics and doctors have my best interests at heart when I see them. Furthermore I do not believe starting HIV treatment means you get to live longer or that it improves your quality of life.

I guess what I’m saying is that I’m starting to view HIV and HIV care in a totally different light. Gone are the days when care providers went the distance for their patients. Long gone are the activists who were willing to go to jail, get in the face of people and even die fighting for the rights of people battling HIV. Long gone are the days when an HIV march actually meant something or led to some groundbreaking turn in the way people living with HIV or AIDS are taken care of.

Maybe I’m just angry right now and for good reason, maybe there needs to be more people getting angry before we see real change. Whatever the case, I no longer believe taking HIV medication is the answer.

It’s been a year and I fully regret starting treatment.   

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