by Jay Vithalani
The best-laid schemes o’ mice an’ men / Gang aft agley…
“Gang aft agley” is the lovely Scots phrase for “Often go awry” (the quote is from a poem by Robert Burns). From an online dictionary of idioms: “Said when something ends poorly or differently than expected, despite preparations for success.” This essay is about my experience of what I did when medical matters went a bit awry while traveling. The simple summary of this story is: I didn’t have to interrupt my treatment for HIV. But that is way too curt and boring. To understand the Hows and Whys of how I averted that all-too-possible and possibly dangerous interruption, I’ve delved into some detail about the background which made many options possible. The background is part and parcel of my personal story.
* * *
I live in New York. I’m a forty-six-year-old gay man living with HIV. I have good insurance. For a layperson, I know a good deal about HIV science and other HIV-related stuff. I’m on medication, my viral load is undetectable and CD4 counts mighty fine. So far, so good.
I wrote “I live in New York” but I almost want to say “lived,” since I’ve spent most of 2019 in Mumbai, India, and will likely celebrate New Year’s Eve here. A bunch of slow-unfolding family concerns—my parents, both in their seventies, live in Mumbai; I grew up here until I was eighteen—meant that I needed to travel 7,800 miles to help them as best I could.
Three months away was the original plan. After all, three weeks in your parents’ home can be a trial; more than three months, I thought, would seriously test my middle-age sanity. More seriously, the problems to be dealt with in Mumbai could only be handled on a longish trip; three-month round trip tickets are cheapish; I had to thinkish about my sublet; and of course meds. Insurance and pharmacies could/would only dispense three months of any and all medications at one time, most importantly Genvoya, the antiretroviral (ARV) pill I was taking.
(And believe me, even though the process of doing this seemed easy-peasy in theory, in practice it was hell. The doctors were cool, insurance company difficult, many phone calls to receive multiple authorizations, and the pharmacies seemingly intractable for no particular reason except inefficiency and sulkiness—a CVS in Harlem didn’t want to “connect” with a Walgreens in Midwood, my passport was deemed insufficient identification by a trainee. Et cetera.)
Speaking of intractability, my original three-month estimate was ridiculous. Geriatric medical issues don’t resolve in a strictly specified period because you want them to. The bureaucracies that deal with legal and property matters in India are notoriously slow. Things (I’m deliberately being vague) were getting a little better at my parents’ home, but only by a little. I had two choices as the ninety-day “deadline” approached: take my scheduled flight back or stay longer, perhaps for a year. I chose the latter. And it wasn’t a choice, really; I’m doing what I need to do for my family, it’s as simple as that.
Luckily, I didn’t have to compromise on HIV treatment, even though Genvoya—the branded ARV regimen, from Gilead Sciences—isn’t available in India. That is, unless you’re willing and able to pay the full astronomical retail price, between $30,000 and $36,000, or Rs. 2.1 million and Rs. 2.5 million. I was not willing and definitely not able.
Genvoya is actually four drugs co-formulated into one large blue pill: elvitegravir, cobicistat, tenofovir alafenamide fumarate, and emtricitabine. That’s quite a mouthful, so EVG/c/TAF/FTC for short. But this one-pill convenience comes at a hefty price (see above). Single-pill regimens are now the norm in most parts of the developed world, and there are many options. It is absurd and stupid to say that being HIV-positive is now “no big deal, whatevs” and that popping a single multi-drug pill is just as safe and easy for everyone as taking a big vitamin tablet. Nope, it isn’t. But we’ve come a long way in just two decades.
* * *
India has long been known as the “pharmacy of the world.” Twenty percent of all generic drugs sold in the U. S. are manufactured here. And globally, an astonishing two-thirds of all anti-HIV medications are manufactured and distributed from India. It’s safe to say that, without the supply of cheap and safe generic ARVs, millions and millions of HIV-positive people would not have had access to ART, especially in the developing world, and that the grim number of deaths from AIDS-related diseases would be much higher than it is. It is devastatingly high still: as recently as 2018, the estimated worldwide death toll, for that year alone, was 770,000.
This is not the place to write a treatise on drug development, patent law, unequal access to treatment, heroic activism, and so on. For my purposes, these are the salient points: the pricing of drugs is strictly regulated in India, and pharmaceutical companies—and these include global giants such as Gilead, ViiV, Merck, GlaxoSmithKline—do not enjoy patent protections the way they do in the U.S. As such, these Indian laws have long been viewed as a scourge by Big Pharma, which—capitalism being what it is—is interested chiefly in maximizing profits. But capitalism is infinitely adaptable, and the Goliaths have found a few clever ways, not all of them pernicious I should emphasize, of at least partially chipping away at India’s patent system.
* * *
This is where I re-enter the story. I’ve been HIV-positive since 2005 but started antiretroviral medication only in 2014. I was a viremic controller (viral load close to undetectable) and an LTNP (long-term-non-progresor, normal CD4 counts). I was enrolled in two studies because of the relative rareness of those facts—my body, my immune system, could more or less handle the virus without medication. Knowing that once I started treatment I would probably have to take it for life, I resisted starting at all at first, and this was with full support from my doctors. That was then, this is now. The best research unequivocally shows that being on treatment if you’re poz is the right medical (and social) choice. I’m glad I’ve been on antiretroviral therapy for just over five years.
I started Stribild in 2014 and then switched to Genvoya (which is Stribild, with one slightly changed chemical, TAF rather than TDF) in 2016. Happily, no side effects except nausea for a day or two. One pesky thing, though—cobicistat isn’t, strictly speaking, an antiretroviral; its function is to boost the power of EVG. And little “c” has complex interactions with a lot of very common medications. So there was some dose-adjusting with other medicines I was taking, either a higher or lower dose. A bother, but not too much of a big deal.
Elvitegravir belongs to a class of ARVs called integrate inhibitors (INSTIs) and is not available for sale within India as a generic, as far as I know. However, Gilead has licensing agreements with Indian pharmaceutical companies so that some lucrative drugs are manufactured for export only. (Weird? Yes, but the whole byzantine world of patent laws and licensing and behind-the-scenes machinations is really weird, often counterintuitive.) But—drum roll please!—a newer INSTI, dolutegravir (DTG) is available as an affordable (well, for a middle-class individual such as myself) alternative. Only one generic company is allowed to sell it in India, though a few others manufacture it for sale outside India.
U.S. and WHO guidelines now recommend DTG-based regimens as the preferred first-line therapeutic option, and doctors often suggest that treatment-experienced patients switch to these whether or not side-effects have been an issue. (Note: this does not mean that Stribild and Genvoya, or other older single-pill formulations are ineffective and “bad”!)
So, after some international e-mailing I decided to switch to DTG-based treatment. I was pretty anxious and worried at first; you don’t switch effective and well-tolerated medical regimens on a whim. But I needn’t have worried. My viral load and CD4 counts are as good as ever. Also: an advantage of dolutegravir is that it doesn’t need cobicistat as a “booster”—one drug, then, can be discarded, the slightly bothersome one, with so many potential interactions. I am currently taking DTG and TDF/FTC, two pills once a day. But there’s a whole alphabet soup of high-quality meds I could take. If I wanted, I could change to DTG and 3TC (the equivalent of Dovato), or DTG/ABC/3TC (the equivalent of Triumeq) or DTG/TAF/FTC (approved by the FDA for generic use in developing countries). And so on. The difference in prices is negligible. Cost per month: roughly $70 to $100.
I offer no thrilling dénouement with which to end, or even a moral (though the Duchess in Alice’s Adventures in Wonderland does say “Everything’s got a moral, if only you can find it.”) But here are some thoughts. First and foremost, I am happy with the choices I have made. I am also fortunate in that I come from a place of privilege, educational and social, and that I am currently in a country where I grew up and know how to medically navigate myself. I am a true nerd (apologies for all the acronyms!) and enjoy research. The truism that Knowledge is Power proved itself to be very true, once again. But access to that knowledge is frustratingly limited, for so many reasons. Finally, the hard fact that individual control of what you put in your body to combat this monstrous virus is a very limited option, and this is true whether you’re in New York or Mumbai.
By the way, the color of both pills I take is blue. Titanium dioxide and Lake Indigo Carmine.
Jay Vithalani studied English and philosophy at Amherst and Harvard. He is the co-author of Horizons: The Tata-India Century. Jay has been living with HIV since 2005 and lives in New York.