October 28, 2016
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| Matt Ebert (Credit: Selfie by Matt Ebert) |
I was on efavirenz for years. Within six months of dropping the drug altogether, I normalized. For the first time in years, I was not flooded with suicidal thoughts, addictions and crippling mental health woes. During the worst years of my life, I met several men on Atripla (efavirenz/tenofovir/FTC) who would go on to commit suicide or overdose. I could easily have been one of them.
Crossing the Blood/Brain Barrier
Back in 2002, I was living in Los Angeles and my doctor and I decided to try efavirenz under the brand-name Sustiva. Sustiva had entered the market earlier with great fanfare because it was considered good at crossing the blood/brain barrier.
Prior to efavirenz, reservoirs of HIV in the brain had been thought to be harder to target or destroy. My doctor described it to me this way: Pools of virus kept me from becoming "undetectable." Crossing the blood/brain barrier might bring me a treatment breakthrough. And for this, he suggested Sustiva.
Related:
Should I Switch HIV Medications?
Should I Switch HIV Medications?
At my doctor's request, I kept a dream journal. In less than three months I filled it and sought another. But something more sinister was underway. I was sleepless, depressed and losing my will to live.
It started with a quick uptick in depression and drug abuse. I had always been susceptible to drug and alcohol addiction. By early 2003, nearly eight years sober from a heroin problem, I started smoking more pot, drinking whiskey straight and taking sleeping pills and clonazepam for anxiety. Benzodiazepines and eventually opioids followed. I was on a slow-burning path towards death.
Don't Rock the Viral Suppression Boat
I complained about all this to my doctor: the addictive behavior, nightmares, sleep disorder, crippling depression and constant thoughts of snuffing myself out in ever more violent ways. The response was always the same: The dreams will pass; get some rest; it gets better. But it never did.
When I had achieved viral suppression, I was told not to rock the boat. Then, as now, the theory was that if something worked, you shouldn't change the regimen. What if no other antiretroviral treatment worked? Worse, what if I became resistant to the one drug, efavirenz, that was working?
By 2002, we had reached a point in history when HIV was finally considered a manageable illness. We should all feel lucky, right? Wrong. I felt anything but lucky. I was consumed by addiction. My bipolar mind was swinging over a great chasm. If my mood swings before efavirenz were mild to moderate, once I started taking it, my moods were swinging over the English Channel.
Worse, overwhelming thoughts of suicide engulfed me every day. I couldn't stop obsessing, and I couldn't talk about it either. We don't live in a culture that tolerates suicide, so talking about suicide is rarely an option until it's too late. I couldn't walk over a bridge, or pass a gun shop, or sit too long in a parked car, or look at all those pills in my medicine chest without thinking: I should just kill myself and get it over with.
Hospitals, Rehabs, Jail Cells and That Rainbow Afghan
From 2003 to 2005, I tried. I overdosed nine times.
I would awake in an emergency room with a red bracelet on my wrist and my body strapped to a gurney. They would revive me with briny water, wheel my carcass to an elevator and dump my bones into a mandated stay in a psychiatric ward for days, sometimes weeks. I was institutionalized, on and off, for the better part of two years, and I blamed everything but efavirenz.
I went to several rehabs too. After 30 or 60 or 90 days, I would be released to the streets, stagger around less than a day, then drug up and overdose all over again. When I was thrown out of sober apartments and group houses with the speed and sound of a phalanx of slamming doors, and when I wasn't hospitalized or incarcerated, I was living out of my car.
One day, after scribbling in my dream journal, I put my diary on the roof of my station wagon and drove off the I-5 freeway. I flipped, and when the cops arrived, my wagon was so loaded with pills, pot, efavirenz and booze they screwed me to a jail cell seat for a week. I sat, vomited and witnessed my own weeklong hallucinogenic detox. I can tell you, in the Twin Toweres Correctional Facility -- one of the county jails of Los Angeles -- no one got meds. I should have been grateful: It was the only place in Los Angeles that I couldn't get efavirenz.
Once on the outside, I ended up in a shooting gallery. There was blood on the walls, there was chipped lead paint and a rotting, foul smelling, faded rainbow-colored Afghan strung across the main room like a makeshift gay pride wall. Young men, now strung out on meth -- once virile, now viral --could bring tricks or johns home to party and play.
The sunlight through the windows burned spots on our faces; ultraviolet rays pushed through the empty crocheted spaces as through a sieve and stained our skin like lesions of Kaposi sarcomas. In this environment men still loved. Desperate hearts still beat in every corner. Most had HIV or what we then called full-blown AIDS, and all of us were addicted. Antiretrovirals were still being served nightly, same as crystal meth and tar heroin.
I one awoke from a three-day blackout barefoot in east Hollywood. Sunburned and dehydrated, I had no idea where Tuesday, Wednesday and Thursday had gone. I had been on my way out of jail on Monday, heading toward my umpteenth sober living house, and when I awoke -- staring at my dirty bare feet and coming to as if off an anesthetic -- it was Friday.
Closer to death, nearing the end, starving and calloused, stripped of any identification or resources, stripped of shoes and shirt, I climbed out of that week by panhandling for change on Santa Monica Boulevard. I didn't get far. I was picked up and sent back to jail for loitering. I was debris, swept up like so much dead dust.
One night, out of nowhere -- I do not know where I got the strength -- I wrote on the bedroom wall I shared with four other "sober" junkies, "I Refuse." The next day, the man who rented me the room blew his head off with a shotgun. I found him out back among the raised red rose bushes. I have erased much of what I saw that day, but that "POP" was a sound I will never forget -- that pop changed everything.
I Refuse
"I Refuse" became a kind of mantra. I refuse to take your drugs. I refuse to go out like a chump. I refuse to die a withering addict. I refuse another day in hell, rehab or jail. As with so many others, I thought my problem was addiction. I now believe the root cause was the side effects of efavirenz. I had no will to live and a mind stuck in a suicidal groove.
The proper term is central nervous system (CNS) toxicity. Today, CNS toxicity is the number one reason people stop taking efavirenz.
I started making "I Refuse" bracelets in occupational therapy and handing them out to any patient who wanted one. Soon after, I refused my efavirenz. In fact, I stopped all my HIV medications somewhere in 2004. I was so suicidal that it felt like a death from AIDS would come as a relief.
Years later, my best friend, also on an efavirenz cocktail, would toss his meds into a trash can and do just that -- he died of AIDS in 2013. Many men who could not tolerate this drug gave up and died.
So when I tell you that, for some of us taking efavirenz, a death from AIDS was a relief from the effects we were suffering, you should now know what I mean. By now, you should be asking yourself how you feel about what you are taking. You should be asking what your friends are taking too.
In 2004, I was committed to a long-term drug treatment facility. It was not fancy. It was the opposite. There was a chain-link fence 20 feet high roped around the dorm to keep me from running in front of a city bus. There were no shoelaces, no razors and no windows to open. When the Santa Ana winds blew hot dirt onto the ball yard, you could see it and sometimes taste it -- but you could never experience it in your hair.
During this time, efavirenz was rebranded as part of an all-in-one combination pill and Atripla was born. As a tradeoff for entry into the drug treatment facility, I had to commit to taking Atripla daily. So, I white-knuckled it. I was still suicidal, but I was sober. And gradually, off hard drugs, things got better -- but they never got right.
Even sober, I never stopped thinking or worrying about suicide until years later -- until I got off efavirenz for good in 2008. Within six months after stopping it, I was no longer flooded with suicidal thoughts, active mental health struggles or addiction.
A recent report says that there were elevated rates of suicide or self-harm in those on efavirenz in the massive START study -- particularly among those previously diagnosed with mental health conditions.
Yet, I have never seen a label read, "Side effects include suicide." September was Suicide Prevention Month in the U.S., and October features the Day of the Dead. As of last year, efavirenz is no longer recommended as first-line therapy in the U.S. Perhaps it's time to abandon this drug altogether.
Read Matt's blog, Kick Rocks.
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