The Collaborative Imperative
Transcript from speech by Kerri Cassidy
I feel so thankful to be here this weekend and humbled that I have opportunity to speak. Many of you have been friends online over the last 4-5 years and it would have been impossible to predict that I would have had opportunity to be here with you back when our story of CCSVI began.
I bring greetings from Australia, from our team at CCSVI Australia and the community of people who are looking to see the vascular connections in MS and other Neurological conditions understood.
I would like to thank Dr Bill Code and the NCS team for their kind invitation and for looking after me so well.
A quick overview of what you can expect from me today:
Let’s be honest
The last 5 years have been tough. I don’t need to tell you this. I for one have had moments of excitement and elation, but often I’ve felt frustrated, angry and powerless. I’ve done happy dances and been filled with hope and at times I have cried hot angry tears. This journey we’ve been on has been painful but so very rewarding.
How do we manage these feelings and convert them into effective patient advocacy?
Let’s be focused
I also want to talk about focus. It is easy to feel overwhelmed. How do we cut through the roadblocks and get to the heart of what we want to achieve and to do it most energy efficiently. Sustainability is a big word in Australia at the moment – Where should we be directing our limited resources to get the result we want?
Let’s be united
Finally, I’m going to pitch a vision about collaboration – I believe that to really ‘Lead the Way’ working together is essential. To maximise the likelihood of providing medical care and treatments that reflect the real needs of human suffering requires the sufferer and the healer to connect. Hence ‘The Collaboration Imperative.” It is heartening that this is exactly what this weekend is about, researchers, clinicians, patients coming together and respecting each other’s unique view.
I’ll be weaving a bit of my story throughout as well as the story of some of the hundreds of people I have connected with over recent years. Hopefully we’ll have a few minutes at the end for questions. I’ll try not to speak too fast so that you can follow my Australian.
Let me get honest.
A number of years ago, about 18 months before I was diagnosed with MS, we travelled with friends to Vanuatu. We had spent the day driving around the island arriving at a waterfall called the Cascades late in the day. The Lonely Planet Guide describes the journey to the site as “A little path with guide ropes wobbles up to the top – it’s steep and slippery in places.” Which is a complete understatement.
I had been experiencing considerable pain in my legs and feet during my holiday however there was simply no question – I was climbing up to see this waterfall.
Not long into the journey I experienced for the first time what it was like for my legs to simply give up on me. The humidity was intense. I remember feeling my legs crumble as my body collapsed onto the rocky path. I felt so confused, so weak and powerless.
Up until only about two years earlier I had been a gym junkie, training 4-5 times a week. I ran 5kms most days. Weird things happened occasionally like being able to lift 10kg dumbbells one day and the next they may as well have been a tonne. My legs would buckle under the leg press from time to time and I was having dizzy spells on a regular basis that left me lying on the toilet floor praying to God that I would not be found dead on the stinky tiles in my bike shorts. No doctor could explain any of this. Apart from a touch of osteoarthritis, specialists who reviewed me gave me the sense that I was simply overtraining or this was somehow psychological.
All of this was running through my head as a lay on the wet rocks. I could feel a stubbornness rising up in me and I decided that I was going to get to the top of this waterfall if I had crawl. My companions suggested I slide back down the hill. And I must have looked ridiculous saying, “don’t tell me what to do – I am going up.” I had hoped to be able to crawl commando style but even my arms were failing. My husband, who knew me too well, helped me up but it was useless, I could barely stand supported. So he threw me over his shoulder and carried me up. I had nothing to hold on with so I was a dead weight flopping. When we got to the end of the path this is what I saw.
I sat on a rock whilst my friends swam in the refreshing waters. It was a pristine magical place. The warm water soothed my feet yet my soul was gushing, and fear was taking hold, seemingly as unstoppable as the water pounding down the rocks.
I had no idea that several years later I would find myself staring blankly at my Neurologist as he said “Kerri your MS is too active, in too many areas. Your prognosis is not good.” Again I felt confused, weak and powerless. I could only walk 2-3 hundred metres with a cane, I suffered overwhelming fatigue, my legs and feet were in constant pain, at times I needed to use a catheter to pee through, my body jerked, my vision was temperamental, I often couldn’t drive. My information processing was affected and my memory was terrible.
Despite taking Tysabri – a drug that was meant to help me climb mountains ironically, if you believe the marketing, my disease was progressing.
It was like I was back on that path to the waterfall and I was being told “it’s too steep and slippery for you. You have to turn back.” And I did, for a short while, I closed my business and relinquished anything that caused me any stress or fatigue. I felt like I had climbed partway up the mountain of my life and that was as high as I was ever going to get.
In January 2010, I reopened an email that Angela Clearly had sent me several months before. “Dear Kerri, please watch this program about Dr Zamboni and CCSVI. This could be it.” I could feel that same stubbornness I felt those years ago as I lay on the rocks of the Cascades. I have to keep climbing, I won’t accept that this is as far as I go.
So long story short I discovered that both my jugular valves were inverted and narrowed and in March 2010 I had them treated at the Alfred Hospital by Prof Ken Thomson.
I had found someone who was willing to put me over his shoulder and see if he could carry me further up the hill.
I had fairly immediate results. My vision became crisp and colours were more vibrant. In fact, I didn’t realise, but all the greens in my palate had paled and looking out my back window to the grass and trees I was quite overwhelmed by their colour. I felt alert and awake, like a fog had lifted. Over the coming weeks the muscles in my legs softened and my walking improved. My stamina built so that I was able to walk 3-4 kilometres and actually feel energised – not like I needed to sleep for a week. A jerk that plagued my every waking hour subsided to the point where it now does not happen at all – even though my neurologist told me this was likely to be permanent. Today I regularly walk my dog 4kms, I stay awake all day, last week I found out that I got the top mark in my course for Sociology – I am not where my Neurologist told me I will be.
At this point I sincerely believed that testing and treatment for everyone with MS would simply be a matter of course. I had no comprehension that there would be opposition to, what I thought, was a reasonable expectation – that if your brain was not draining properly, that doctors would help you. I believed that my Neurologist and Vascular specialist could sit down over coffee and discuss my case like grown ups and that I that my future health would be their utmost concern.
My Neurologist was initially interested in the CCSVI research, however, over a few months he moved to say “there is nothing wrong with your veins” to “I just don’t believe in it.” It was confusing, it was frustrating and it hurt. Many of us found ourselves in the position that we had been tested and treated for venous abnormalities; we had scans, pictures and measurable symptom improvements. My Neuro confirmed a few months after the procedure that he had never seen me so well. He had read the report of my angioplasty and had seen the scans. He was very unhappy with my behaviour. I had one Professor, my interventional radiologist, tell me my veins were severely stenosed, the valves inverted and I had reversal of blood flow and another Professor, neurologist, tell me my veins were normal. And I had the experience of functional and symptomatic improvement that had changed my life. It was scary to have doubts in my neurologist who seemed way off the mark to me.
The honest truth is the last four and half years have been a painful struggle. My health has been great, incredible in fact. I know initially I had a lot of anger at this response of my neuro. I was angry with hospitals who closed their doors to people with MS, I was angry with the MSS for not representing us, I was angry with pharmaceutical trials that were awash with money, and I was angry with our government for not taking all of this on. I was angry at researchers who claimed that there was no scientific evidence of a relationship with venous abnormalities and impaired blood flow and the lesions that lace many of our brains. I know that many of you were angry, many still are – those with enough energy to be, but many, overwhelmed, simply couldn’t carry this feeling any longer and have walked away. And they have had to, for their own health. Others have managed to channel these feelings into action.
You see, I don’t want to waste my time and energy. I want the work we do, to hit the right spot, with greatest impact. I want to go for the jugular. I don’t want to see communities of people with MS implode. We need to respect that right now, not everyone is on the same page, some people want to trust their neurologists who say there is nothing wrong with their veins and not cause waves. Some actually disagree with what we are doing, that there are more important areas of research for resources to be channelled into. Some have their heads in the sand and presume that if there is something to this – it will just happen. Even in this room there are differing opinions and you may well disagree with what I have to say today. That’s ok.
I heard a patient activist say a few weeks ago, I am motivated by mission not passion. I love that. I don’t want to be motivated by anger. I want to be fuelled by the stories of people who’s lives have been changed by having their blood flow repaired. My heart is for people with MS to have the experience that tomorrow can be a better day, that some of their symptoms can be treated and that they can have function restored. I want to be motivated by the hope that this work may unlock a cure.
If we focus on the peripheral annoyances, the trolls, things the MSS are doing or not doing, the obstacles that are in the way, how can we get past them?
We will expend a great deal of energy attempting to push through or just hanging on when maybe it is smarter to just go around them or even over them?
What we have seen, not just in our two countries, but indeed globally, is people come together in an information network that had not ever been seen by a patient group before. It has sent traditional medicine on edge and shaken the very pillars of medical ethics. Globalisation has affected how we share resources and information, collaborate, socialise and explore. Medicine is not immune.
However, if we could take a step back and look at the discipline of Neurology, it appears to be attempting to stand in front of a speeding train in my observation. One thing I have learned is that Neurology is based on long held traditions, conservatism, ways of measuring evidence and they tend to sit at the top of the medical tree. I mean no disrespect; these are my observations over recent years.
The challenge for us is that currently, Multiple Sclerosis and many other conditions associated with CCSVI, fall under the headship of Neurology. And they need convincing. We need to appreciate this culture if we wish to communicate: to understand and be understood.
We have attempted to appeal to their hearts, we hoped that there would be compassion for us and that people who are suffering could be treated if there was the smallest possibility that they could benefit. Generally this has been coolly brushed aside.
Really our fight has to be intellectual and it has to be in a common language. It has to be, I believe, in the arena of medical research. This is very hard to accept sometimes, as someone who has experienced considerable benefit from having my blood flow restored. I want as many people as possible to have the same experience and we have helped hundreds in Australia be treated now. But for everyone to be treated, for it to be available on our public health, for it to be part of protocols for the newly diagnosed… we need the kind of evidence that Neurologists and our regulators respect.
You are not going to read in Nature journal about the grandmother with PPMS who can now take her granddaughter to swimming lessons. You won’t read in Multiple Sclerosis Journal about the 48 year old man who has returned to work after 12 years on disability benefits. The Journal of Neurology won’t publish the story of a young mum who, after treatment, felt well enough to start a family or the guy in his twenties who no longer needs that little blue pill. And you won’t read in any scientific paper my daughter at age 10 say, “my mum used to be boring but now she is fun.”
There is such a disconnect between our lived experience which is full of variables, unique to every person, and a scientific paper that controls for everything except a treatment and a set of observed outcomes. Outcomes that are agreed by scientists to be the desired endpoints. which may or may not reflect the same outcomes that a patient values. It reduces us to a population of sameness. An impersonal, statistical average that determines the walls of a box in which we all are presumed to fit.
What we hear over and over… “we need the evidence” “we need long term data” “we need placebo controls” Initially, these words made me want to scream, argue and explain why that is simply unnecessary. But you know what, four years ago Professor Ken Thomson said to me, “we need to do the study to convince the neurologlists, we only have one shot, we have to do it right, it’s going to take ten years.” (Ten years!!!) This reality check helps me smile and say, “I understand why you need this – you cannot feel what we feel, you have not experienced what we have. We will get what you need in order for us to get what we need.” It’s as simple as that. That’s the game.
This is why we in Australia are adamant that we need statistically significant studies that are of the protocols acceptable to neurologists. It has to be placebo-controlled or they will always say our improvements are due to placebo effect.
(Just as an aside, I strongly object to the placebo expectation – it feels wrong to intentionally not treat people who have treatable abnormalities.)
We believe we have one such study underway at The Alfred, and you are going to hear from Dr Helen Kavnoudias on that shortly. But we need replicated studies in multiple centres, we need our doctors to continue to collaborate, to agree on standards of diagnosis, to develop follow up protocols, to research why some people’s veins are treatable and some are not, to investigate more effective treatment methods… and it needs to be done with collaboration with the people it most effects.
I want to understand why some people’s veins do not remain open, I want to understand why some people have vascular abnormalities and some do not, I want to understand for those of us that do, what the relationship is to Multiple Sclerosis and other Neuro diseases.
We need the continued support of the clinicians and researchers who we are hearing this weekend. And we need to support them.
In September 2012 the MSS communicated to us that they would not support further CCSVI research or assist in progressing the issue. That same month CCSVI Australia became a legal entity in its own right and The Alfred study commenced. You see, if we want to see this through, we need to focus on what is going to work. Clearly it is the opinion of the MSS that it is not their role to satisfy our questions about CCSVI. I also understand that my Neurologist will not be convinced unless there are placebo controlled double blinded trials that are repeatable. I know that my government will not pay to treat people for CCSVI unless there is evidence provided. I think two years ago we were focused on persuading these groups.
And do you know what I think we have finally discovered? That after trying to take the bull by the horns, demanding that the MSS society works for us and that our Neuro’s respect our experience, I realise that there ARE people who believe in us enough to champion us. People with CCSVI, our families, we cannot do it on our own. We need researchers, we need curious scientists, we need clinicians who are willing to throw us over their shoulders and carry us.
Dr Helen Kavnoudias is one of these people, as is Ken Thomson, who have listened, who have considered our experience and are willing to seek some answers on our behalf.
Ken Thomson treated about 50 people with MS in 2010 who presented at his hospital with various venous abnormalities. The results were such that they led to the design of the study that is now underway. I remember looking at him when he told me that this process would take ten years and thinking, “Yeah right. Like it is going to take ten years. I expect this to be well on the way within the year!” But something that I learnt is that the doctors who are researching this are very experienced, and they know a lot more than me and I have learnt to sit at their feet somewhat and listen. So when I am told that this is going to take ten years – this helps me to have realistic expectations. Initially we were all very excited, that people were being helped by this treatment, that it should be made immediately available but I think as frustrating and painful as this process is, at the end of ten years, we will have moved so much further than we would have if our governments and hospitals simply dished out this treatment. We wouldn’t have had the rigorous research that we have underway, we wouldn’t have had the debates between our neurologists and our vascular specialists, we wouldn’t have had to fight so hard and we wouldn’t have grown the resolve that we have.
It would not have mattered how stubborn I was, or how much willpower I had, I needed people to carry me. Today we need doctors and researchers to continue to take us on in hope that we can continue to climb. I don’t deny it is a heavy, costly and slippery journey. As patients, we cannot, by brute force or by reasoning, lift ourselves up from the rocky path. We need to be seen and heard and for those who are compassionate, skilled and able, to pick us up.
So just to recap, let’s be honest with ourselves, this is and continues to be tough. We can focus on the things that we are able to do. We can support each other, support the scientists and researchers , like the ones we are hearing from this weekend. We can take our place in the conversation – as the people most affected by the research it is our right to be there.
I look forward to a day when we can all pour a global glass of champagne and say, “we did it.” Cheers!