By Guest Blogger Rob Quinn
As a long-term survivor on antiretroviral therapy living and thriving with HIV/AIDS, I have thought countless times through the years of switching over to a new HAART regimen. Downsizing to one involving fewer pills to take each day with fewer possible side effects and fewer doses each day. The thought of one pill, once daily with little known side effects sounded almost too good to be true. On the other hand, I’m from the early days of HIV treatment in my thinking where we had few if any options. Thoughts of “if it ain’t broke, don’t fix it,” “side effects are just a way of life,” and “what about drug resistance?” created a barrier to this possibility. Sound familiar?
It was at an AIDS Project Worcester, World AIDS Day 2013 event where Leif Mitchell, Senior Community Liaison, Boston/New England, Gilead Sciences made a presentation on the HIV Treatment Cascade. Part of his presentation included a discussion on engagement and retention in care. This included: HIV medications, possible side effects of both older and newer generation medications. I recall Leif indicating that with the newer generation medications, HIV-positive individuals experiencing medication-related issues, such as gastrointestinal, may no longer have to. This immediately caught my attention as I had been experiencing such unpleasant side effects for over ten years, often many times weekly. However as fast as it caught my attention, it lost my attention. I was just fearful of switching over. What if the newer medications don’t work? Why change if I am technically doing well (meaning I am virally suppressed) on my current regimen?
A month later at my first quarter 2014 routine appointment and blood monitoring with my infectious disease specialist Dr. Claudia Martorell, owner and director of The Research Institute in Springfield, MA , I was reviewing with her what was going on since my last visit and what I was currently experiencing, such as “my usual diarrhea.” Dr.Martorell said, “you never mentioned diarrhea.” My reaction was simply, “it is part of the journey.” Dr. Martorell echoed and reiterated what Leif had said just a month prior; “it does not have to be.” Dr. Martorell went to further evaluate if what I was experiencing was a side effect of the medications, and sure enough it was. After much discussion and thought, and more than a decade on my previous Highly Active Antiretroviral Therapy (HAART) cocktail of Kaletra and Truvada and still dealing with known side effects of lipodystrophy, lipoatrophy, gastrointestinal (diarrhea several times weekly), I made the decision to say goodbye to the old and welcome a newer generation cocktail of Tivicay and Truvada.
Why now? Dr. Martorell informed and reassured me that todays research shows that HIV-positive individuals, like myself, who are treatment adherent with their HAART, have a stable CD4 absolute count, and have a consistent undetectable viral load, can now switch over with an understanding that if for some reason their body does not respond favorably to the new HAART cocktail, he/she can resume their previous HAART cocktail. A few years back this was not an option for me, as there was a great likelihood of drug resistance. Having this new knowledge made me more confident in switching over. From past experiences, I knew the initial adjustment period for HAART HIV regimens may present many hurdles to clear. However, the time was now and I was ready! I took the next couple of months to physically, emotionally and spiritually prepare myself and my body for this newest path on my journey of living and thriving with HIV/AIDS.
Under Dr. Martorell’s close supervision, the first steps included final routine blood monitoring and now new baseline blood monitoring. For me, this switchover decision meant downsizing to two pills daily and with less known, if any, possible side effects over my current regimen. I recall early on in my journey twenty-one years ago taking upwards of forty pills daily, the first being AZT and at one time Norvir, which required refrigeration – side effects too long to list.
The decision of whether to change regimens and what to change to was complicated and a bit overwhelming. I have to admit I was a bit anxious about changing the life-saving medication regimen which worked so well for me for so long. On the other hand, I was looking forward to a “new color pill” that will undoubtedly improve the quality of my life. In partnership with Dr. Martorell, I made the decision to embark on this new path which I approached with great excitement and positivity. As an inspirational peer recently once shared, “Positive. Just like my blood…positive.”
Other than experiencing an adjustment side effect of insomnia, my body responded favorably! The baseline switch over results – one month on new HAART Tivicay/Truvada combination: CD4 Absolute at 550 (stable), CD4% at 25.0 (up from 20.7%) and viral load remained consistently undetectable. Insomnia, a common side effect of Tivicay, only lasted about a month. Important to note was that within days my gastrointestinal issues ceased. Well, it has been over a year now and I am happy to report my June, 2015 routine blood monitoring findings: CD4 Absolute is stable, CD4% at 30.4% (a 9.7% increase), and I remain virally suppressed and without gastrointestinal issues!
It is imperative to note that medication effectiveness is only as good as medication adherence. Skipping medications gives the HIV the chance to multiply, increasing one’s viral load. Poor adherence also increases the risk of drug resistance. Therefore, before changing to new medication it is important to talk with our provider about adherence, if this is an issue.
Like everything else on my life’s journey, the more I put into managing my HIV, the more I will get out of gracefully aging while being fairly healthy with HIV/AIDS. Unlike the early days of HIV, today those of us living with HIV/AIDS have so many viable options for starting or changing HIV treatment. It’s important to not only find another regimen that works for us, but one we can also live with. Lesson relearned: keep informed and up-to-date on medication advancements, new “recommended” regimens, and be sure to honestly share with my provider anything and everything as it relates to my HIV care and overall health and well-being. What was once “a way of life” or unpleasant medication side effect, such as gastrointestinal issues, no longer has to be. The choice is ours!
Thanks much Dr. Martorell and Leif. I am always moving forward and never looking back, except to see how far I have come.