A little while back, Harm Reduction Victoria held its Annual General Meeting for the 2016/17 financial year. Such events are typically rather dull, comprised in the main of dry administrative tasks demanded by law.
But we do make some effort to colour things up. Jane Dicka, our drug overdose educator, showed a short film titled Straight Shooters. Funded by INHSU and deliberately mimicking the format of the ABC series You Can’t Ask That, the movie opens a window into the lives of people who inject drugs (PWID). It is intended to dispel commonly held misconceptions, to push back against discrimination and stigma, but has the added advantage of being rather heartwarming and really quite sweet. It was first presented by Jane and Samantha Jones (our communications genius) at the ‘International Symposium on Hepatitis Care in Substance Users’ held last year in Jersey City, New York. It’s definitely worth a look, if you feel so inclined...
Traditionally, we also host a guest speaker at our AGMs. Generally, this speaker comes from outside the organisation, but this year we heard from HRVic’s Executive Officer Jenny Kelsall, who has recently retired from her role owing to poor health.
Jenny is a legendary figure in the harm reduction world and her legacy is nothing short of extraordinary. Her life has been epitomised by groundbreaking and untiring work as a voice for one of the most marginalised elements of our community – users of criminalised drugs. Her influence has been pervasive. She is admired across the board by gastroenterologists of renown, health providers of all stripes, policy makers and politicians, health advocates and by her drug using peers
Jenny used the occasion to speak about herself and her health. She was at pains to make certain we understood that she did not choose this topic because she was ‘self-preoccupied or overly narcissistic’ – an absurdity to anyone familiar with a career dedicated to helping people other than herself – ‘but because of a telling irony at the heart of (her) recent experiences and (her) current ill-health’.
She elected to describe her personal experiences because she believed – rightly, I would think – that they would be educational for some of those still infected with Hep C, particularly those who, for whatever reason, may be delaying treatment.
Much of the following is taken directly from Jenny’s speech (with a little judicious paraphrasing). I found her words poignant. I hope you do too.
Jenny’s health has been reduced for some time now. In the first half of last year she took three months long service leave, and it was only a week after she returned to work that she fell and broke her hip. While recovering in hospital, she was diagnosed with cirrhosis and, ultimately, advanced liver cancer.
‘I was given months rather than years to live and, when pressed, the doctors guesstimated my life expectancy at five to twelve months. As you can imagine, I was completely shattered.
‘The shock of the diagnosis was compounded by a profound sense of irony, and the part my own folly and procrastination had played in my predicament.
‘Harm reduction and the prevention of blood borne viruses are major areas of focus for HRVic. As a result, I had always considered myself relatively well informed about Hep C.
'"Then why," I kept asking myself, "was I unable to protect myself?”
‘I’ve come up with a lot of explanations… but none of them make much sense at this point in my life. My thinking was circular – I would go round and round in my head, getting nowhere fast.
'It went something like this:
‘- It won’t happen to me! I guess I harboured that very human delusion and simply thought that it wouldn’t happen to me – to someone else perhaps, but not me.
‘- I know too much. Somehow, I saw my knowledge of Hep C as a protective factor. After all, I knew what to do, where to access treatment etc... (As I speak, it’s hard not to choke on the irony of these words and sentiments.)
‘- I was too busy (for treatment).
‘- I don’t drink! I have not drunk alcohol since I was first diagnosed more than twenty years ago. Alcohol is heavily associated with cirrhosis (and can accelerate the progression from fibrosis to cirrhosis) but I knew that for Hep C patients abstinence, in and of itself, cannot prevent cirrhosis - nevertheless, I saw this lifestyle choice as another protective factor.
‘- When the new treatments came online, they seemed too good to be true. To that point, Hep C treatments had been nightmarish and I, like many of my peers, found it hard to trust early positive reports about the new DAAs (Direct Acting Anti-Virals). (When these drugs did in fact live up to their promise, I had never been happier to be proven wrong.)
‘For myself, I had never seriously considered the old interferon treatments, although I supported many clients more courageous than I through that very difficult experience. Though suspicious of the new DAAs, I was ultimately convinced by glowing reports from the first groups of people to receive treatment. The drugs appeared to be as effective and as easily tolerated as claimed. People were keen to access treatment, myself included - but I did not act.
‘- Like the vast bulk of people living with the virus, I was asymptomatic. Though I knew this did not rule out serious progression of the disease, it was another aspect of my ‘magical’ thinking.
‘- I’ve got plenty of time! Again, the irony of these words is hard to swallow. It could well have been too late already, but I will never know whether procrastination was my downfall or whether the die had already been cast.
'- They won’t be able to get blood. (TGF: See this post) My difficult and damaged veins have posed problems for many years, making blood tests virtually impossible. Again and again, I have approached pathology services only to be sent away with no result. In the end, I was left with nowhere to go. (A current blood test, of course, is a mandatory part of the work up before starting on treatment.)
‘And so my thinking went, around and around in ever diminishing circles. And the thing about circles is that their beginning is also their end - and their end their beginning. As I have already commented, I got nowhere fast, achieving little - aside from an overwhelming sense of my own stupidity and short-sightedness. I had not heeded the warnings - despite all that knowledge I had accumulated on the dangers of Hep C.
‘Then, somewhere along the line, it occurred to me that if it was happening to me - and I was unable to save myself – it was, in all likelihood, happening to others as well. Inherent in the supreme irony of my story, I saw that there were lessons for us all.
'The first concerns HRVic itself.
'We need to keep doing what we do here – and do it with a vengeance. For all that we’ve achieved over this and previous years, we still need to do more.
'Our peer networkers – those true Hep C treatment ‘champions’ – may be complaining of ‘Hep C fatigue,’ but they cannot slacken off – and need to do still more.
We need to refresh and enlarge membership in this peer networker army - to increase its reach and enhance HRVic’s credibility among as many PWID communities as possible. We must ensure that our educational resources, both electronic and print-based, remain relevant and appealing.
'Ultimately, we need to remain tireless in our efforts to spread the good news gospel of DAA treatments. We need to accept the fact that human thought is not always rational – particularly when it comes to ones own health - and that it can take time for people to act on what they learn, no matter how convincing the case for treatment.
'Certainly, people should be given time to make their own choices, but it is our job to make sure they know that treatment, without exception, is best done earlier than later - especially, as is common, if they have been living with Hep C for decades.
'We must clearly stress the truth that a lack of symptoms is not always indicative of a lack of disease – remembering that most us are asymptomatic. (Sometimes, as in my own case, even if the disease is at an advanced stage.)
'We need to encourage regular testing. And we should continue to advocate for alternatives to traditional blood taking. New techniques (including Dried Blood Spot analysis (DBS)) are already in the pipeline, but they cannot arrive soon enough for our PWID community, many of who have damaged veins and cannot easily supply blood for testing.
'We must continue to challenge stigma and discriminatory practices in the healthcare system, and to support community members if and when they are subjected to this kind of cruel, inhumane treatment. We need to support them through all their fears and foibles, so they can benefit from the new treatments - and in doing so further reduce the pool of infection.
'I could go on, but I trust I've made my point. I hope that my story will help others avoid my mistakes and inspire them to seek treatment before it is too late. After all, as they say… ‘It’s an ill wind that blows no good’.
'Despite our society’s love affair with youth and living longer, we all die. No one gets out alive. But, thankfully, Hep C is no longer the death sentence it once was. DAAs have flipped that equation on its head.'
Jenny Kelsall is a rare bird with a sharp, ranging intellect and a nature as caring and as self-sacrificing as I have seen. Above, she speaks of the human mind’s ability to rationalise, to fool itself, even when it comes to deadly serious questions related to its own survival.
She has scoured her mind in search of the reasons why she (perhaps fatally) delayed her own treatment, but there is one reason in particular which, I believe, she has omitted to mention.
Over my time with HRVic, I’ve had many extended conversations with Jenny on the subject of Hep C. It makes sense, of course, given that Hep C and its treatment is the raison d'être of The Hepalogue.
Even before the bad news struck, we had often spoken on the subject of her own treatment – and why she appeared to be delaying it.
One day, I wondered aloud if - perhaps unconsciously - she felt that a cure might somehow undermine her credibility as a peer, as a peer health advocate for PWID - that she would not be able to communicate as forcefully or as honestly to her constituency. Because, without Hep C, she would no longer be in the same boat. Because she would no longer completely share their concerns, their fears, and their pain…
I saw the wheels turning in Jenny’s mind. She neither confirmed nor denied my contention, but I feel there is an element of truth to it.
I find it difficult to imagine this level of commitment to a cause, to the wellbeing of others, to those particular, struggling, marginalised others for who Jenny has fought for so long - and who, by and large, will never know what she has achieved for them, and what tremendous sacrifices she has made.
However, there are many – like me, I hope, and others in this sector, whether clients or providers - who do have knowledge of Jenny's remarkable achievements, and who will remain inspired to continue her extraordinary work.
Jenny concluded her speech with ‘a few lines from John Berger,' one of her favourite poets. I'll finish up similarly:
In that town across the water
Where the dead take the census
And there are no vacant rooms
For his gaze occupies them all
Where the sky is waiting
To have news of a birth
In that town which pours from the eyes
Of those who left it
Between two chimes of the morning
When fish are sold in the square
And the maps on the walls
Show the depth of the sea
In that town I am preparing for your arrival
The Golden Phaeton