My Shifting Seat on the HIV Merry-Go-Round

Treatment Cascade: A Spotlight Series

Following the treatment cascade's estimations, about two-thirds of people living with HIV are connected to HIV care after their diagnosis -- but only a little more than a third of HIV-positive people stay in care. In this article, Ed Perlmutter describes the sort of attentive, thorough care he received, which helped him stay connected to his providers and navigate starting HIV meds.

Regarding HIV clinical care, my friend James always says, "stay close to the center of the merry-go-round." And it's great advice. Stay close to the center and gravity keeps you balanced and secure, in the right spot, even though you're spinning fast, round and round. Shift out from the center and all bets are off. For the past six and one-half years, I've had my ass firmly planted at the center of the merry-go-round, right where I need to be. And I've been holding onto that spot for dear life, and there I've received the best HIV clinical care I could possibly imagine.

I had a full-blown case of AIDS by the time I was diagnosed with HIV in July 2006, but that's another story. In the two months leading up to starting HIV treatment in mid-September of that year, I felt like the walking dead. Yet I tried to maintain some sense of normalcy, and would slog to work each day and slog back home, so extraordinarily fatigued I could barely move from the sofa, where most nights I would sleep, waking in a pool of sweat. At diagnosis, my CD4 count hovered around 50, and my viral load kept increasing exponentially (on September 14, 2006, my viral load was well over two million copies).

Ed Perlmutter
Ed Perlmutter

Timing, as we know, is everything. Bad timing and bad decisions and bad choices led me to seroconvert and to accept HIV as part of my life. Dr. F., the primary care physician who ultimately suggested an HIV test and delivered the news, also worked with me in those early weeks after diagnosis to get me under the cover of an umbrella of care. And this is where good timing so beautifully came into play, fortuitous timing indeed, and it can be said that in those days I got my first nudge to the best seat on the merry-go-round.

Dr. F. knew of a National Institutes of Health (NIH) drug study for adults infected with HIV, and the Boston-based portion of the study was set to commence that fall. And so within several weeks I began an intense round of study qualification diagnostic testing at the Infectious Diseases Unit at Boston's Brigham and Women's Hospital. Everything kept falling into place as I met one study criteria after another (recent HIV diagnosis, never having been on HIV meds, low CD4 count and high viral load, among others). I also got to know the ID clinical team during those first months, and in addition to teaching me so much about the virus, they explained that this particular study was not of the experimental kind. Given how ill I had become, I would have been hesitant to risk being a guinea pig on non-drug placebo and the possible outcomes that might occur. Rather, this randomized, double blind study, NIH Protocol #A5202, would be comparing the efficacy, safety and tolerability of four approved anti-HIV drug combinations (Sustiva [efavirenz, Stocrin] with Truvada [tenofovir/FTC], Sustiva with Epzicom [abacavir/3TC, Kivexa], Reyataz [atazanavir] with Norvir [ritonavir] and Truvada, and Reyataz with Norvir and Epzicom).

Those were stressful days for sure -- severe anxiety, depression and physical illness make for bad company. But the nurses and physicians at the ID clinic treated me with respect and exhibited patience and wisdom every step of the way. We had begun to forge a relationship built on truth and trust. I learned that I would be on the Reyataz, Norvir and either Truvada or Epzicom arm of the study, and in my infinite wisdom I thought it would be a good idea to start treatment during the week I had planned September vacation at my friend's house in Wellfleet on Cape Cod, quiet times in a peaceful place, no distractions or responsibilities except taking care of myself by commencing my treatment. The clinical team thought my plan acceptable provided I check in with them on a daily basis. Within six hours of taking my first dose, however, I started to feel ill and by the next morning I had broken out with high fever, tremendous chills and extreme nausea.

"What's your temperature?" Asked Jon, one of the study nurses, when I called the clinic the next morning to let them know how my first day on the meds had played out.

"My fever is high," I replied.

"How high?" he asked, and sheepishly I confessed I had no thermometer.

"GO BUY A THERMOMETER, ED!" Said Jon, in all caps. But he did not actually scream into the phone; instead there was compassion and understanding in his voice, a tone of genuine yet firm concern. My fever stayed around 103 for the first four days yet the physicians and nurses urged me not to give up and to keep taking my meds at the prescribed time each day. Things will improve soon, they said. And I trusted them. I did not want to believe otherwise.

I liken those first days on meds to a Holy War against the virus, thousands of sophisticated and trained pharmaceutical soldiers at battle with millions of copies of the virus. It was exhausting work, as I imagine combat can be, and wars are not always won or lost in a few days. I recently found the two-week journal from the onset of the study, and it chronicles a harrowing first week on my meds. Around day three I broke out in a complete body rash and had no appetite; incredibly fatigued, I was doing my best to sleep as much as possible. On the seventh day things changed -- I started to feel more alert, my temperature broke, and I was much less nauseous and fatigued. In short, I felt worlds better, and called the clinic to thank them for talking me through those early days of battle, and for their encouragement to stick with the meds even though I had considered flushing them all down the toilet.

My viral load started to come down dramatically in those first months, and my CD4 count inched upward. I was no longer classified as an AIDS patient, and started to resume a more normal and energetic life. I continued to visit the clinic every month for blood work and questionnaires and informative discussions about HIV. Odd as it may seem in the midst of a sterilized hospital setting, I look back at those times as days of warmth, nurture and stability.

About two years into the study, my viral load started to spike for no apparent reason, in the 450-copy range. I had maintained 100 percent adherence to the meds, never missed a dose, and my viral load had been undetectable for more than 18 months. What was up? As it turns out, I was in a subset of study participants that the investigators were looking at quite closely -- those who began treatment at a viral load higher than 250,000 copies. And it turns out that they were seeing similar viral load spikes across the country in other participants who fell into this category. The team at the Brigham and Women's explained in detail and lay terms what was most likely occurring, and under guidance from NIH they were prepared to break protocol and do something that rarely occurs in this type of study -- open up the one randomized medication to see if there was a pattern. And indeed the pattern proved to be Epzicom. Dr. Paul Sax, the principal Boston investigator, explained to me that I could remain on Epzicom -- long term viral load effect unknown -- or switch to Truvada, which had a more stable track record for patients in my subset. Considering this a no brainer, and relieved at how the investigator's ultimate concern seemed to be for the participants' health and well-being, I switched to Truvada and continue on the Reyataz, Norvir and Truvada combination to this day. In large part, that's why drug studies occur -- if an unexpected result transpires, data is considered and recommendations are made, and because of this study's results Epzicom is no longer used in first-line treatment regimens for those HIV patients starting with a viral load greater than 250,000 copies.

The portion of the study where my meds were provided at no cost ended several years ago, but I've continued going to the ID clinic every three to four months as they collect blood and follow-up data for additional NIH research into long-term effects of the drugs, and other results from complete blood work; they also save some blood at each visit for future research. I had been told the study was to end at some point this year, and when I emailed my nurse Cheryl the other day to find out when that would be, she emailed back within an hour. Her prompt replies have become another reassuring reminder of the quality and level of care I've received since September 2006.

As it turns out, the long-term data collection portion of the study will end by fall this year, and when Cheryl told me that I felt as if the rug had been pulled out from under me. The folks at the ID clinic are the only HIV team I've known, and in my HIV journey they've been there for me every step of the way. Sure, my primary care doctor knows about my HIV status, but he's not an HIV specialist, and I don't relate to him with the openness and honesty in the same way I do with the ID team.

When the study comes to an end I'll have no choice -- I will no longer be a patient of the ID clinic, and I'll have to find a new way, on my own. This is what I envision moving toward the outside of the merry-go-round might look like; dizzy, I'd be hanging on but unable to make it back to the center. Experience and time has taught me that is the only place to be. But because I wish to remain healthy and undetectable I'll do my best to find my way back to the center and to a level of care comparable to the extraordinary quality care I've received from a collaborative team of dedicated clinicians. I consider myself so fortunate, and to my ID team I shall remain forever grateful.

Send Ed an e-mail.

Read Ed's blog, An Accidental Activist.

Read other articles in this spotlight series.