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The Latest Stories By Louis "Kengi" Carr

  • Evolve is just the beginning
  • Evolution
  • Six years in
  • Adherence
  • Starting treatment

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.

Feb17

Adherence

Monday, 17 February 2014 Written by // Louis "Kengi" Carr - L.A. Correspondent Categories // Health, Treatment, Living with HIV, Opinion Pieces, Louis "Kengi" Carr

Our LA guy Kengi and how access to treatment issues can impact adherence and ultimately hinder the chances of staying in care

Adherence

Adherence, adherence, adherence. Ask anyone with HIV and they’ll most likely tell you that they hear this word all the time, just about as much as they here “stigma” My fear with living HIV has not been adherence or stigma, but access to quality health care and if and when the time came for me to start an HIV medication, access to the medication.

As I stated in my last entry here on PositiveLite.com, I decided to start HIV treatment back in August of 2013. This choice was made not because my T-cells had fallen or that my viral load has risen beyond a certain predetermined number set by the CDC and what they consider to be the “standard of care”. This choice was made by something I decided shortly after being diagnosed on April 3, 2008 and the commitment I made to myself to always be proactive and fully in charge of my health care. Because at the end of the day, I am not some made up number on some chart or graph set forth by people, places and things who do not know me.

I made the choice that once my T-cells dropped below 900, I would start HIV treatment. I also made the choice to be fully aware of what my choices were when it came to selecting which medication was best for me and would not interfere with my life. Luckily for me I had a doctor that was fully supportive of this choice and made certain I had all the information I asked for and needed to make the most informed decision about HIV treatment.

Being an activist and HIV peer support advocate I also have firsthand experience and a wealth of information for people I try my best to serve. Having close friends who work for pharmaceuticals companies and those who work for HIV agencies were also a huge help to me, but the bottom line is that I had to know this for myself. Even with all this support, I still had to know and fully understand for myself. Taking a back seat or even the passenger seat has never been an option for me.

Long story short, before I left for Burning Man last year I made the choice to start Stribild. It’s a relatively new medication on the market, once called the “quad pill” because it is four medications in one. Within the first three weeks my T-cells were back above 900 and my viral load had fallen from 69 thousand to 20. By the next month my T-cells were over 1000 and viral load was undetectable. Lipids, kidney and liver functions were all normal and there were no real side effects to speak up, but then came what I feared the most. Not having access to meds.

In preparation for the Affordable Care Act both ADAP and the Ryan White Care Act were sunsetting here in California, meaning they were going to become the payer of last resort. This meant I would have to move into a program called Healthy Way LA which would also go away at the first on the year. Healthy Way LA did not have Stribild on its formulary which meant I needed a prior authorization from my doctor who was now on vacation. My clinic had no clue what to do, after two weeks of not having my HIV medication they offered to change my medication until they got the matter resolved.

My choices were Atripla, a once a day pill, but with side effects I was not willing to deal with or I could take three pills a day twice a day which did not fit into my life. I knew I would forget to take the last dose. This is when I was told to “relax” and it “really didn’t matter” because “missing Stibild doses wasn’t a big deal” I was told I was “over reacting” and “upset for no reason” It took three weeks for it to be corrected.

In that time I made the choice to change clinics. My doctor was awesome, but the clinic was changing for the worse and I no longer trusted my care there.

In November I made the switch to the Jeffery Gooodmon Care Clinic inside the Gay and Lesbian Center. My first appointment went well, but again when it came time to get my medication there was a problem that no one knew how to fix and I went another two weeks without medication. Again I was told “you worry too much”, “just calm down it’s not that big of deal” I was even called “arrogant” and “entitled” However this time I did not want to change clinics again, the doctor I was assigned to seemed ok, and maybe going without HIV medications wasn’t a “big deal” and maybe I was simply “over reacting” so I simply waited to see if things would get better.

They only got worse. My doctor. paid more attention to the damn computer then he did to me, he does not return calls and would not answer any question I had about my health care. There were times I’d show up for appointments and be asked to do more blood draws, sometimes the same blood draws that were done just two weeks prior. The final straw was when I had to pay for medication that my new insurance covers.

I walked out pf the Gay and Lesbian Center, the very place where I should also feel welcome, never experience guilt, stigma, shame, intolerance, but most of all the once place that should FULLY understand just how vital HIV medications are. I walked out feeling like it was time to fall out of care.

What was the point in being in care, after all the talk about “adherence” and making certain you don’t skip doses, here I was being told by doctors, nurses and support staff that it was no “big deal” and that I was “over reacting” So what’s the point of “adherence”? What’s the point to staying in care?

Shortly after meeting the one and only awesome HIV doctor I’ve experienced, I started taking a multi vitamin and a low dose aspirin. I pretended these pills were my HIV medications. I wanted to be fully prepared when the time came to start treatment. In nearly six years I’ve never missed taking these pills. I have been late by a few hours, but I’ve never missed a dose. When I started HIV treatment I never missed a dose, until I did not have access to them. To say that this has fucked with my head mentally and caused me to question everything I know about HIV care and treatment is a huge understatement.

Many times that people fall out of care it is not because they don’t give a damn or that they are lazy and don’t want to take their medication. It has nothing to do with their family, churches, friends or support system. Nothing at all to do with any guilt, stigma or shame they might feel. Many times the reason for falling out of care is caused by the people, places and things administering care.

(to be continued) 

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