So much to talk about. So many lively conversations underway in the world of Hep C treatment.
Everything seemed so straightforward back when it all began on March one. Indeed, fool that I am, I expected the subject to be done and dusted, that I would be wrapping up The Hepalogue for want of material. Nothing could be further from the truth. In maths, mind-boggling complexity can erupt from the simplest of equations – now I feel I’m seeing something of the like in my humble corner of the woods
I’ll tick myself off first. After all, The Hepalogue was primarily a first-person treatment blog when it was conceived about 10,000 words ago.
I’ve got my final tests tomorrow. The ones we’re given 12 weeks after EOT to confirm the absence, nay, the merciless and utter annihilation of our abominable parasites. A week or two after, I’ll get the results (viral loads take a little longer than typical blood tests). I’m not worried. With the new treatments it’s rare for the virus to rise from the dead – not quite so rare, however, in the days of interferon when researchers bemused themselves seeking the hidey-holes from which it so often emerged after its presumed destruction.
In my waters, I expect good results. (Almost wrote ‘positive results’ just then. Now the image of Donald Drumpf’s doctor is in my head – and his statement that all Drumpfs’s results were ‘positive’. Remarkable practitioner. I’m pretty sure he was writing mandrax scripts in Grey Street back in the day.) Anyway, as time goes by I’m feeling better and better.
It almost feels as if my health is feeding on itself. It can happen. If one feels better, one may not feel the urge to self-medicate – and therefore one may feel better the next day. One may even feel sufficiently keen to go on a walk which may, in turn, makes one feel even better…
Okay, I won’t get carried away. I know it’s not possible to ride this wave to Nirvana. But I do feel ‘positive’, fitter, more able. For all I know it may be self-hypnosis, but I’d be genuinely surprised if I get lousy results.
Though don’t for a minute think it’s all been beer and skittles. I spent two weeks in bed recently, as miserable as a dead mole rat being recreationally consumed by oily hagfish at the bottom of some dreadful toxic sump…
In fact, some talk of treatment-related depression and various ‘low moods’ has been reaching my ears lately. A senior hep nurse has actually asked me to put the question out there. Presumably, she’s encountering these episodes sufficiently often to at least consider a cause and effect relationship with the treatment.
(If you have an opinion or an experience connected with this issue, or any other, please share below. In the comments section. That’s if you want. No pressure. It would make my heart glow, but, as I said, no pressure.)
The question of side-effects is getting a little vexed lately, so I’m going to dig in a bit. I’m going to contend – perhaps ‘theorise’ is the better word – that the anxiety/depression we are hearing about is less a direct effect of the drugs than of the life change caused by the drugs doing their job. Frequently, DAA-based treatments eliminate the virus as early as a week after the commencement of treatment, so confusion is understandable.
In the media one is exposed to various lists: top ten most liveable cities, biggest carbon emitters, largest corporations by market capitalisation, etc. Though I haven’t seen it in a while, there’s one which tends to stick in my mind – it’s the hit parade of life’s most stressful events. I find it interesting that, mixed in with ‘death of spouse’ and ‘being arrested’, are some of life’s (presumably) most joyous occasions: marriage, birth of child, buying a house…
I won’t spell this out too much – the reason for this is change. Whether good or bad, any large-scale life event causes change, hence stress, and then, among some, depression and anxiety. Among many – if you take into account the challenges faced by a good percentage of Hep C sufferers. And their often bumpy life stories…
Shrugging off a lethal illness – one you may have had so long that it literally and profoundly defines who you are – is a point of change. A pivot. Obviously. People deal with change in as many ways as there are people, but dealing with it is a process and for some of us it may be hard. Painful even.
My mind is sharper now … Strange … Things are clearer … I see my life in context, I see the narrative arc … I’ve got no job … I’ve ruined every relationship I’ve ever had, and people think I’m a miserable junky…. My symptoms used to keep me in bed all day … I’m cured now … but still in bed… What’s stopping me from getting up? What’s wrong? Something’s wrong?!
I have more energy now … but what do I do with it? Tell me! Should I stay in bed? Just while I work this out? Of course I have plans… I know what I want to do… Of course I do… But how? How do I utilise the … energy? Energy! It’s a goddamn alien currency! I’m not even sure I know what I mean when I say ‘energy’. And plans? What are they precisely…? And how, precisely, do I re-landscape my inner life to include the unexpected gift of health when health, for so long, has seemed an unattainable goal?
Might go fuck myself up. That’s a plan. And I’ve got the energy for it …
I’m sure you’re getting my point. With all kinds of unfamiliar, yet emotionally charged stuff streaming in one’s head – particularly when one’s identity is suffused indelibly with societal stigma – some degree of stress is surely inevitable. Looking back on looking forwards, to March one, it may have even been predictable. As a side-effect. Not of the drugs, but of the cure.
I may have quoted this before, but being cured of Hep C can be like losing a disabled child. People sometimes identify with the disease so deeply that to lose it induces a kind of separation anxiety.
We’re thinking about this currently at HRVic. We’re tossing up ideas… perhaps support groups (for want of a better description) for people facing these? Online forums? Humans do like to share with other humans, after all. (It’s the reason we have a problem in the first place!) My colleague Visarys Targaryen (assumed name?) recently conducted some focus-groups around pharmacotherapy. The participants were paid, and in essence it was nothing more than a few hours work – all the same, a surprising number thanked him from the bottom of their hearts for the opportunity to express themselves.
There’s something about getting things off your chest. There really is. So, again, say anything you want below this post – even if you just think these are good (or bad) ideas to pursue.
Moving back to side-effects, I suspect there’s another psychological aspect we should at least consider.
Interferon has nasty repercussions. It is known (as the Dothraki crones would say). Ribavirin is nearly as bad. The hypodermic component added to the perception that Hep C treatment is painful, onerous and generally very grave. (And it was.) Over decades, crumby experience upon crumby experience has been described to the world and I would think it likely that oppressive side-effects have come to be associated with Hep C treatments in general – in our community psyche.
Enter the new treatments. It’s possible, surely, that despite assurances of minimal physical/mental side-effects, people may often hold to an opposing opinion, just on the track record. It’s almost a form of stigma. When we get headaches and sleeplessness it may be convenient to blame the treatment because, as everyone knows, Hep C treatments are hardcore. A friend of mine, phoning from an ambulance, explained that her boyfriend’s spasms were due to the new Hep C pills he was taking. Never mind his long term use of methamphetamine. Everyone knows that Hep C treatments are hardcore.
Not saying, of course, that side-effects cannot or do not exist, or that they shouldn’t be taken seriously. It’s just that there may be other considerations, that we should not immediately jump to conclusions. DAAs are some of the most specific medications ever devised. They attack particular elements of infinitesimal virions and, as I have been told by one doctor, therefore are much less likely to interfere with the general functioning of the human body.
Yet what we are told by the Big Biotech companies is derived from trials with very carefully selected participants. This isn’t suspicious or anything; it’s part of the scientific process. Results are simply more reliable with an homogeneous cohort (read ‘identical guinea pigs’ if you must).
Things change however when a drug is released into the wild. Bring on the misfits and the mutants, the rare birds and the queer fish. When outliers enter the equation, who can say what will result? We have had rashes with telaprevir, photosensitivity with simeprevir, and we certainly cannot write off new side-effects emerging.
Let’s keep in mind though that the new treatments, on evidence, do appear to be remarkably safe.
I was going to address something new in the state government’s Hep C elimination effort, but there doesn’t seem to be space or time for it this week. Just so you know, a group called the Eliminate Hep C (EC) Partnership has been formed and contains all the usual suspects: government reps, medical researchers, doctors, nurses, peer advocates etc. On a brief scan it appears like some very sensible and realistic things are being addressed. More news in the upcoming weeks.
Probably from day one, I’ve been promising personal stories from people on treatment, but the Hep C cosmos is ever-volatile and things just keep getting in the way. Rest assured I’m working on getting this material to you.
The Golden Phaeton