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SMART to START: A Little Learning

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You've heard the Big News. The numbers are in--early. For the START (Strategic Timing of Antiretroviral Therapy) trial, that is. This is indeed a landmark study and it has, justly, been treated as such. (SMART, or Strategies for Management of Anti-Retroviral Therapy, was another important trial, early and mid-2000s.) The lede in The New York Times: "People with H.I.V. should be put on antiretroviral drugs as soon as they learn they are infected, federal health officials said Wednesday [May 27] as they announced that they were halting the largest ever clinical trial of early treatment because its benefits were already so clear."


From the general to the personal: my (new) numbers are in--right on time.


Backing up a little: I started antiretroviral therapy just over two months ago, on April 1st. Almost ten years after seroconverting.


A few things, numerical and situational, I didn't mention or make explicit in that post:


(1) I knew a lot about, but did not undergo a course of, PEP ("post-exposure prophylaxis").


(2) ARS: I didn't really have the 'flu-like "acute retroviral syndrome" that often occurs in the weeks immediately following infection. There's a lot of research which shows that the duration and severity of ARS correlate strongly with HIV disease progression.


(3) I was diagnosed with acute infection very early--by myself. My first positive test result was in 2005 itself, in September. Antigen, not antibody, testing: Qualitative DNA-PCR. This was followed a few months later by ELISA and Western Blot.


(4) My "viral load set point" was less than 100 copies. The average viral set point is ~ 33,000 copies (taking into account viral load "assay variability"). The higher this plateau level, the quicker the disease progression, and vice versa.


(5) I was offered the option of getting on meds several times in the last decade. And insurance concerns played no role in my decision (decisions, rather) to abstain from treatment until now, and likewise played no role in my recent determination to begin ART.


OK, that's a pretty rounded picture I think. All this, along with what I wrote ten weeks ago, is meant to explain and to justify my decision to delay ART. Each person, each "case," is different, and I think I've made the right choices. Repeating myself though: "The natural question then: why did I choose to start ART now?"


Some of the important criteria, not arbitrary, that I kept in mind:


(1) My viral load was slowly inching upward, trend and slope unmistakable. My VL (over the last three test results) was consistently in the range of 5,000 copies. In other words, low-level viremia increasing. (More nerdiness: on a logarithmic scale, base 10, that's an increase from 1.8 to 3.7).


(2) While my CD4 absolute counts are still in the 700s or higher, the CD4 percentage was declining--from 37% to 30% or just a bit higher. Still in the normal reference range but still a clinically significant decline.


(3) The CD4:CD8 ratio. In people with a healthy immune system, this is almost always >1. Until recently, mine was always so. However, in recent months it fell below 1, to 0.8. This is still "pretty good," many people with HIV, even those who have been on ART for a long time, have a lower ratio. Nevertheless: the direction was clear (again, over three lab test results over nine months).


(4) Background inflammation. Not as "hot" a topic of research excitement and clinical questioning as it was, say, five years ago--but this just means that there is a consensus now. Even if the inflammatory markers--IL-6, D-Dimer, and so on--seem normal (as mine did), that does not mean that the insidious effects of inflammation aren't present.


(5) And side effects. Like many people living with HIV, I was afraid of  possible and unwelcome side effects of treatment. Mainly: psychiatric problems such as horribly vivid nightmares and "brain fog," highly visible body fat redistribution, and long-lasting gastrointestinal issues.


What do I have to report after 10 weeks on Stribild? Well, side effects have been mild and transient (knock on wood); small and expected effect on renal function values. From AZT monotherapy to integrase-inhibitor-based regimens, in a single pill and generally easy to tolerate: a treatment revolution in less than 30 years. As for inflammation, I can only assume that it's been smacked down (if it was ever even significantly "up"). The ratio has normalized--it's 1 again. The CD4 percentage is inching back upwards, to 35% and (I hope) above. And my viral load is undetectable, below 20 copies. Just what the doctor (literally) ordered.


Alexander Pope famously wrote that "A little learning is a dang'rous thing." But he continues: "Drink deep, or taste not the Pierian spring: / There shallow draughts intoxicate the brain, / And drinking largely sobers us again."


I am no expert on HIV research or clinical management; in that sense I'm certainly guilty of having only "A little learning." That having been said, my temperament is research-oriented: I have tried to drink deeply (using Pope's metaphor) as a layman, and to let that nerdy water be a sobering and not intoxicating influence. I've had the luck and luxury of time on my side, and the good fortune as well of having access to great health care and amazing sources of information. Harnessing all that, I'm happy to have arrived at this recent determination: it was smart to start.





One month in...


After one month on Stribild, some thoughts and links.


Adherence. This is almost ridiculously easy with just one pill a day, taken with lunch. Like a vitamin. So far I'm at 100%--very early days, I know. Read a study recently, though, which questions the (financial) wisdom of co-formulations. "The development of single tablet regimens may meet a demand from people living with HIV and clinicians for treatments that are more convenient and easier to take, but can the high price tags be justified by better patient outcomes?"


Side-Effects. Terrible nausea, really awful, for the first two or three days; mild diarrhea on the first day. And that was it for GI protestations. But getting used to the shenanigans of cobicistat (one of the four medications in Stribild): that took about ten days. Had to alter, lower the doses of some other meds. As one friend put it: "Welcome to the trials and tribulations of Cytochrome P450 3A4."


Cobicistat "is a potent inhibitor of cytochrome P450 3A enzymes, including the important CYP3A4 subtype." "By combining cobicistat with elvitegravir, higher concentrations of the latter are achieved in the body with lower dosing, theoretically enhancing elvitegravir's viral suppression while diminishing its adverse side-effects."


Iowa. Once upon a time I used to read novels and watch movies simply because they had gay characters in them. So it was that I had seen Boys Life 2, a compilation of four short films, in the spring of 1997. One of these, "Alkali, Iowa," stood out for me then; I saw it multiple times at the Kendall Square Cinema in Cambridge. I still think it's a superb gay "short." When a long story by Annie Proulx called "Brokeback Mountain" was published in The New Yorker, in the fall of 1997, I remembered that short film from earlier that year...


Seventeen minutes long, written and directed by Mark Christopher, it's available on YouTube, check it out:









Days of 2005: Settling-In, Studio 13, Snogging

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It was easy enough to furnish my one-bedroom apartment that third week of August. My needs, as well my budget, were modest. Iowa City is a student town after all, and in the final weeks before the Fall Semester there is a network in place to help with the large number of arrivals and departures. Yard sales on every corner, practically. Flyers everywhere advertising delivery service by pickup truck. (Pickup trucks everywhere, casually muscled men in their teens and twenties with farmer tans, ditto.) And, of course, an insanely busy Target.


I had done my research in June and July--bus routes, faculty, course listings, popular restaurants, banks, cellphone services. Information on the queer "scene" was more difficult to come by or at least more difficult to evaluate; not everything can be foretasted online (more's the pity).


I had no desire (at least not yet) to be a part of the undergraduate gay group. The sparse (and seriously outdated) notes on cruising spots all had a sad and desperately optimistic ring to them. The situational homosexuality of frat culture certainly intrigued me; and I was to learn almost too much about Greek life in the years to come. For now, though, where did this morass of vague impressions and uncertain information leave me? A quiet year, a long journey; a solitary week of bustle and jet-lag and settling-in. A visit to Studio 13 seemed to be in order.


(O Studio 13, thou know'st that many hourglasses of mirth and melancholy were spent upon thy ambivalent bosom! 'Tis true this, the discharge of promis'd duty was much doubtful, rais'd as a firing cannon tho' I often was.)


A full description of the place, Iowa City's only gay bar, and its small but significant role in my life, would take too long and lead me into further digressions. So, for now, for this narrative, just a few salient thoughts and facts.


I was intensely curious: just what would a gay bar and nightclub in the Midwest be like? Unsure of any sartorial subtleties required, I was determined to play it "neutral"--could one really go wrong with faded jeans and a white t-shirt? And, almost certain they would not be needed, I had on my person a condom and a sachet of lube.


Carded, at the age of 32. Hurray! 1980s New Wave music playing at the time I got there, 11ish: hurray again, I could actually dance to this. And the drinks, served by impossibly cherubic bartenders, absurdly cheap. Three cheers, right there. Crowded, and pleasantly so, but not packed to the gills. Pretty smoky; but also the heady, and wonderfully familiar, almost-olfactory sense of testosterone and pheromones: in an entirely new space. To the dance floor.


An hour of sweat later, and with the fortification of two more G&Ts, I surveyed the landscape. I seemed to be neither too young nor too old, I felt Goldilocks-ish. There were plenty of zygotes (all of legal age, no doubt) with those neon glow-stick thingies, and stoic solitary men in their 50s and 60s with beer and resignation. I'm genuinely a terrible dancer--sometimes I just jump and down to a thumping song--but I liked the accidental (or occasionally tactical?) bumps and brushes with other dancers. Speaking of brushes... one guy I had been next to on the floor, and had (perhaps?) exchanged smiles with, was now standing near the bar area as well. More smiles. Was he (a) dopily smiling-in-general or (b) in hot pursuit of someone else? I was old enough to know that this kind of pre-flirtation could be (a) entirely in one's mind, or (b) real enough but snuffed easily because of endless doubting and indecision and tedium. I put my hand out and shouted one syllable: "Hi!"


Matt turned out be a graduating senior on his way out of IC--perfect. Not quite Norman Rockwell; but perhaps that was just a matter of the trendy haircut and cigarette. Tall and rangy, very (summer-sunshine) blonde, confident in his looks, with more than a dollop of what gay men, in certain contexts, call "attitude." But he seemed genuinely curious about Bombay, so I shamelessly played up the exotic Big City angle--"20,000 people? Try 20 million!" Or something along those lines. The loud music obviously made conversation difficult, though it brought our faces very close to each other; and conversation was not a high priority for me at this point.


Back on the dance floor: the snogging began. Glorious summer weather: making out outside the club, pausing only to share a cigarette. Of course, the grinding of denim-covered erections. Handsy, then handsier... but wait, best not to go for the superlative just yet. So, a tipsy walk to Matt's apartment--mirabile dictu, he didn't have roommates!--laughing about nothing in particular, singing songs, and snogging.

Days of 2005: Mumbai to Iowa City


I arrived on Sunday the 14th of August. Mumbai to Iowa City: needless to say, it was a long and punishing sequence of flights. BOM to AMS, AMS to DTT, DTT to CID--that last code the one for the Eastern Iowa Airport. My lease began on Monday the 15th, and in any case the apartment was unfurnished, so I had reserved a few nights' stay--very low rates for incoming students from distant lands--at the university's Memorial Union. After a brief shuttle ride from the local airport--oh lawd, how marvelously dinky, how laid back, how utterly bereft of any copies of the NYT!--I collapsed on the bed in my generically pleasant room, exhausted but happy. Plenty of cornfields seen from the air on the Detroit-Cedar Rapids flight.


Keys picked up on Monday. Teary pilgrimage paid to the Main Library--I had been without proximate access to an excellent research library for nearly seven years! Now was the time to buy some essentials (a mattress perhaps?) and walk around. It was hot, close to a 100 degrees; and when I saw the track team running by, shirtless, my craning rubbery neck almost led me to walk into passing traffic. I am not by nature a flâneur. "Get or rather become lost in any new place, that's the best way you'll get to know it"--that sort of thinking forms no part of my creed, thank you very much. As it is, I get lost in places I know very well all the time, so I much prefer the supposed gaucherie of an unfolded, creased map while navigating novus locus.


It had been a quiet year. After the application materials had been mailed in January, I did a bit of freelance tutoring; after I was accepted to the Nonfiction Writing Program as an Iowa Arts Fellow, in March, I lived frugally on savings in my parents' home. I stayed in most nights reading, or watching TV with P--the peals of giggles and gasps I shared with her were infinitely more satisfying than going to Indigo for another evening of good martinis and stale chatter. Oh, Bombay and its claims--or do I mean claws?--could not wholly be ignored, but I was satiated with the new habit as it were of monkishness. How different from the relentless restlessness of a year or three ago! I used to be the first one to apply, to myself and with self-conscious glee, that old chestnut of a joke: I would go the opening of an envelope. Ha-ha! Twenty-seven nights out in an uninterrupted row--that was my record. (It is one that still stands, and it has no chance of ever being defeated or bettered.)


As for sex... there had been a rather listless session of mutual masturbation in January with a very tall chap, which turned into an attempt at a sleep-and-cuddle. When that didn't work out--small bed, elbows and knees everywhere, struggle for blankets--crepuscular goodbyes were said in haste and mutual relief. After that, it was a half-year of celibacy. Almost. Hadn't Sartre said, with a complex literary moue, that "Genet prefers his own caresses because the pleasure that is received coincides with the pleasure that is given"? That neat formulation about onanism was all I needed as justification--as if any were actually needed!--for my withdrawn self-caressing monkish life.


I had always "booked" my annual physicals--since I turned 21 and if I had any control over the scheduling--for the last week of January. The usual stuff, testing of reflexes, "breathe in and now breathe out," two or three narrow and brief beams of light poking about. But also and always with a complete laboratory blood work up, including an HIV test. No different this January: comprehensive checkup, everything was shipshape, and that included my eleventh consecutive non-reactive HIV-1 antibody test result. In early August, a twelfth happy and negative pas de deux with Lady Elisa: the university required X-rays and completely up-do-date vaccinations, and I had requested the local private lab, unnecessarily I suppose, to conduct another round of blood tests. I remember pretty much skipping over the HIV "section" in the sheaf of test results. Nerding out over titers and then over the clinical non-significance of minor fluctuations... Now, that was interesting stuff, and who says that unnecessarily poring over the minutiae of a lab report can't be fun?


All my bags were packed, I was ready to go. On the jet plane now. Mumbai to Iowa City, door to door, in a mere 30-or-so hours.

Where and Who and WHEN?

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I was infected with HIV around 3 a.m. on 21 August 2005. In the village quaintly known as Iowa City. And by a guy named "Matt" (more about him in a bit). I know these three things beyond a degree of reasonable doubt. Am I lucky, am I glad, to be in possession of this knowledge--the when, the who, the where--or unlucky, unhappy, to have it?


Neither, I think: I don't feel lucky or unlucky, sad or glad. It's a complicated and touchy subject. It's not a theoretical matter of epistemological apathy. Nor is it some casual triple-shrug of practical indifference. But many friends and acquaintances simply will not not not believe me when I say that, on balance, I could live pretty easily without this knowledge. What can I say to counter their doubt? Make some kind of all-vanquishing aphoristic retort? So... "Ignorance may not always be Bliss, but Knowledge is not always Power either." More loud cries of disbelief--and derision! I don't think I'm going to win this one.


Even so...I've never quite understood the obsession some HIV-positive gay men have with identifying, with some precision, When they were infected. I mean, it's a natural desire to have, of course I get that, the desire to know how long you've had this bug inside you--but is it worth agonizing over? And over and over? And then, after a while, all over again? Pop psychology: well, it's a defense mechanism, it helps block the awful feelings of the present, especially if you've just been diagnosed. The hope is that, once other ways of coping have been found, the severity of this yearning will pass if not the actual desire itself.


Impossible not to look backward; but let's try to look forward as much as possible, yeah? You have your test results--and no, you cannot do a simple extrapolation from the current CD4 count and viral load to determine length of infection--and let those be the guides from now on. And no, don't go hunting around for "detuned assays," whatever you may have read on the Internet. Even if you find a commercial lab that can and will perform one (very unlikely), it's not going to tell you much, trust me. All that, in brief--lots of italicized words, trying to mingle an emphatic tone with empathy--is what I've found myself telling many men over many years.


And, to make the obvious point, this obsession--let it be a brief one!--underscores, in one strong way, the need to be tested annually. For HIV and other STIs if you're a sexually active man or woman. Take A. and B. and C. Three intelligent and highly-educated and successful and good-looking men, from three different countries I should mention--none of them had had an HIV test for at least three years before testing positive. A. simply didn't think he was at risk, the sex he had was so "tame and negotiated." B. acknowledged high-risk behaviors but was terrified of a laboratory Day of  Reckoning. And C. was bafflingly clueless, for whatever reason, about the importance of annual testing--his longtime GP had after all never said any thing.


Crudely: complacency, fear, and lack of knowledge. A. and B. and C. took quite a while to reach even the first "pillar" of the treatment cascade: diagnosis. B. half-expected his test results, but A. and C. were stunned. B. is again the exception: he was curious, more than curious, about the method of transmission rather than the exact time of infection and seroconversion, though he urgently wanted to know if infection-length dictated the nature and speediness of treatment. A. became briefly obsessed with the When question. With C. I feared that the relentless pursuit of an answer had risen to clinical OCD levels (and after much gentle-strong nudging, he did go into cognitive-behavioral therapy for a few months).


More about these, and related, matters in my next.


An ART Start. Some Numbers. Choices.

Today I took my first antiretroviral pill. Yep, just one pill--Stribild. With lunch: a cheese and mayo and tomato sandwich washed down with grape juice (no, not wine). Yum. A bit nervous, yes; but every time I look at the people in the ads for Stribild--in their blue overcoats, complete with epaulettes and bright yellow collars and cuffs and plackets--I have to laugh.


For those with a biblical bent, look up these verses: Jeremiah 8:22 and Hosea 6:8.


It seemed like the right time to begin. I chose to swallow. I could have, ahem, chosen to spit--by which I mean, bad wordplay notwithstanding, I could have made a decision to delay treatment.


The rest of this post is pretty nerdy in parts--it has lots of Numbers and Acronyms. Future posts, I hope, will not have more than a just concentration of jargon. But Numbers and Acronyms and watered-down Medicalese are part of my HIV life and cannot wholly be avoided.


The decision to start ART, antiretroviral therapy, wasn't taken lightly and I suppose it never should be. Some general points, probably known to most readers. If CD4 numbers are low-ish or low (below 500 cells/mm3 or 350, depending on where you live--and even who you ask, even in 2015), a certain measure of choice is taken away from you: you will be strongly urged to start ART. Even "bullied" (!) to do so by your healthcare provider, if he or she is a JustDoItDammit type of person. There is a now a worldwide near-consensus that if CD4 counts fall below 500, treatment is strongly indicated. In "resource-rich" countries any way.


What's more, the current United States DHHS guidelines recommend that everyone who is HIV+ should be receiving ART. (There are complex scientific and epidemiological and public-health matters behind this blanket recommendation, none of which needs to be addressed right now.)


And I live in the U. S. of A.


Some biographical, and numerical, facts.


(1) I was infected on 21 August 2005, around 3 a.m., in Iowa City.


(2) Over the last ten years my "numbers" have been remarkably good. My mean and median absolute CD4 counts are still, as of March 2015, around 750.


(3) My CD4%--a number that is generally more stable over a period of time, given that absolute CD4 counts can fluctuate quite a bit, even within the course of a single day--has been rock solid for most of the previous decade, 37%. So: in early 2007, my CD4 count was 550 or so (the lowest it's been); in mid-2011, it was 1,050 (the highest it's been). But despite these fluctuations, within the normal range, the CD4% was identical: yes, 37%.


(4) My viral load, until recently, has remained well under 1,000 copies per m/L for eight years. For most of those years it has been close to undetectable.


(5) Though the definitions of "LTNP" ("Long-Term Nonprogressor") and "Viremic Controller" differ somewhat among scientific studies, I have satisfied the conditions for both appellations. I was enrolled in one of Dr. Bruce Walker's studies at the Ragon Institute, in Cambridge, MA, for a long time. I was almost enrolled in an NIAID study at the NIH--but the bureaucratic hassles proved to be exasperatingly insuperable.


(6) All my other "numbers"--CBC, Chem Panel, eGFR, BMI and so on--are fine, although even a skinny guy like me has to watch his cholesterol (too much Cookies-and-Cream ice-cream?). No STIs, no Hepatitis C. Boringly normal. Even inflammatory markers (more about these, and the ongoing research about the role and consequences of inflammation in general, in a subsequent post) are normal. Measured twice, with a five-year interval between the tests. Specifically: CRP, D-Dimer, IL-6.


(7) A "virtual phenotype" was conducted in 2009. I had no resistance whatsoever to any of the ARVs then available--"maximal responses" that is. (Janssen Diagnostics, by the way, no longer offers this test.)


(8) I have been blessed with excellent nurse-practitioners and doctors in Iowa City, Boston, and now New York. Each respected (and respects) my intelligence and knowledge and none was (or is) of the JustDoItDammit type. Shudder. I would not be able to accept medical advice--or dicta--from such a person.


(9) I take antidepressant medications. (My first depressive episode was at the age of 10.) The "cocktail" of these meds--and we speak also of HIV or AIDS "cocktails"--has been adjusted, tweaked, gradually or radically, over the last 20 years.


(10) I met a man in 2008 with whom I was involved (as they say) for almost a year. He was and is HIV negative. In 2010 I met a man who I married in 2011; we got divorced in 2014. He, too, was and is HIV negative. Five years, let's say, of monogamous serodiscordant relationships in the past decade. I am 42-years-old.


But I have now slightly exceeded my 800-word blog post limit.


PS: Pretty much all that I have recounted here is Good Stuff. Looking over my lab reports, a friend once asked me--it was a bemused accusation--whether I was this obsessed with being in the 99th percentile. The natural question then: why did I choose to start ART now?

PPS: In the comments, assuming there are any comments, I'll be happy to respond to some of the technical matters mentioned here or ask someone to do so on my behalf.





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