Opinion editorial piece by Catherine Stace
A decision is currently looming by the National Health and Medical Research Council (NHMRC) on their Targeted Call for Research into debilitating symptoms attributed to ticks that could spell the difference between patients being given a fair shot at remission or relegated to disease management.
Respectfully, I think I speak for everyone in our community, patients want remission.
Remission will enable patients to get on with living a productive and fulfilled life. To make this happen we will need to establish a personalised medicine model for Lyme like illness or in our case DSCATT, which sounds more like a snazzy jazz dance move from the 40’s than it does a serious disease.
Uttering three dangerous words like ‘I’m not convinced’ is all it could take to cast doubt on a stack of evidence supporting a personalised model for tick borne disease in Australia, such is the power of influence bestowed upon the review panel that remains top secret. Let’s hope they have an innovative mindset as well as scientific credibility.
We just need to look to Australia’s model of care in depression and anxiety as indicators of how a legitimate roll-out of Lyme disease as a manageable chronic disease would look.
The distinction with Lyme disease compared to say depression, is that it’s not acceptable to medicate a Lyme patient for depression when we know a micro-organism may be causing neuro-inflammation, leading to depression. This patient might still receive anti-depressants however the treatment regime remains focused on eradicating infection and inflammation.
A personalised medicine model is the only way to move forward for patients like us who experience diverse and interchangeable symptoms. A blanket treatment protocol will fail patients. A systemic disease needs individual treatment. How else will we get to adaptive clinical trials and meaningful data that will serve to inform future cohorts of patients and provide early access to evidence-based treatments?
I used to think decision making in Australia was a fair and just process but if this was the case Australia would have acted swiftly in response to Dr Michelle Wills’ 1992 discovery of the bacteria known to cause Lyme disease, called Borrelia, in Australian ticks.*
So what lies beneath?
We have a major flaw in how we reason what constitutes moral duty of care to Australians on the issue of Lyme disease.
When we have a managing government, don’t expect compassion, rather, expect controls, incremental change, risk mitigation and a drive to maintain the status quo and honoring agreements and respected opinions of the day, even bad ones. Herein lies the problem.
Let our most vulnerable patients be assured the LDAA and our SAC will lead through complexity for a positive outcome with or without government support. Because this is our moral duty of care to patients and indeed to all Australians.
Knowing a bit about the future state of personalised medicine models, we need some fundamentals to kick start the model and this is what the LDAA has been quietly working on.
Through our Science Advisory Committee (SAC), chaired by Professor Gilles Guillemin, a world expert in Kynuerine pathways, (neuro inflammation to most of us), we have established a model for gathering samples, capturing meaningful data and identification of biomarkers, identifying what’s in ticks and individually matching treatments. This is where our patron, Dr Horowitz’s marvelous MSIDS model and new Dapsone protocol and Klinghart’s herbal protocols can get a robust workout in an adaptive trial.
As a patient group, we don’t need to replicate traditional approaches, we don’t need to fight in despair for our rights and divide people, but we do need to co-design the future the way we want it to be.
The government is a valued and important stakeholder but they are not our one and only saviour. Let me be clear. The government will not save us. The NHMRC peer review panel will not save us. Department of Health has the power to take action and perhaps they will take action however we the patient community are the architects of our own fate.
As evidenced by our SAC, the LDAA is strategically collaborating with key stakeholders globally, and are poised to leapfrog and emulate the success of other disease groups, saving valuable time and money.
It’s time to speak out on the personalised medicine model. We have concerned warriors among us. We have courageous doctors who place moral duty above career suicide. We also have dissent and divide among patient groups that can align on the model and change the energy and intent of our efforts. Momentum is a powerful, motivating force, funding is the enabler.
Ultimately, it’s the fluidity between patients and scientists collaborating together within a personalised medicine model that plugs and plays through established hubs and nodes such as Dr Horowitz’s MSIDS model that will succeed, allowing empirical data to reside with patient wisdom to shift the dial on our understanding of emerging diseases such as Lyme disease.
Other disease groups in Australia understand the potency of future ready models, we don’t have to be heroic, what we need is humility to reach out, collaborate and emulate the success of other disease groups who have paved the way before us.
*Dr Wills is well known in the Australian Lyme community. As a university graduate, she and her supervisor Prof Richard Barry, were the first to report Borrelia (a species of bacteria of which some strains cause Lyme disease) in Australian ticks, in 1991. The pair then collaborated with other members of the Microbiology departments of Newcastle University and Sydney’s Royal North Shore Hospital, to examine the responses of patients with Lyme-like illness to Lyme disease tests.
After promising findings on this second project were published in 1994, the trail went cold; we couldn’t find any further documents by Wills and Barry. A government-funded study (known as the ‘Russell and Doggett’ study), also in 1994, concluded that there were no Borrelia in Australian ticks and it was suggested that Wills and Barry’s 1991 discovery was simply disintegrating forms of other bacteria, that had the appearance of Borrelia. The government accepted this conclusion and no further research funding was made available. The Australian Government Department of Health has consistently used the Russell and Doggett study to support their “no Lyme here” stance ever since.
Previously unavailable excerpts from Dr Wills’ thesis were a revelation to the LDAA and we reached out to Dr Wills for more information. This resulted in a supplementary submission to the Senate Inquiry.
The LDAA were pleased to announce that, in partnership with Dr Wills, we ensured that the entire thesis was available online for the first time. The thesis is 319 pages in length, and, as one would expect, is at times highly technical. The LDAA have therefore produced a summary of the information that was previously not widely available to the media and patient community, and put it into context. It has been reviewed by Dr Wills to ensure accuracy – we thank her for her time.
We hope that this analysis of the thesis will highlight the Australian Government’s ongoing bias in relation to progressing our understanding of Lyme-like illness, and as a result, patient well-being.